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What is a low carb diet, really? When can a low carb diet be beneficial? Should everyone follow a low carb diet? Or, can a low carb diet ruin your health? After reading this eBook, you’ll be able to understand the many factors that play into how a person handles a low carbohydrate diet, and whether or not their health will improve on such a plan.

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Chronic Fatigue Syndrome and Stress: A New Frontier for Treatment?

This is a guest post written by staff nutritionist Kelsey Marksteiner, RD. Click here to read her blog or join her newsletter!

If you or someone you know suffers from Chronic Fatigue Syndrome (CFS), you know how devastating this condition can be. While some may function well, others can have their lives practically ripped out from under them – unable to work, go to school, or engage in many of their favorite activities.

CFS is a somewhat controversial disease due to its lack of objective findings in patients. Through the course of its history as a known syndrome, its definition has changed dramatically, but it is currently diagnosed when a person has (1):

Clinically evaluated, unexplained, persistent or relapsing fatigue that is of new or definite onset; is not the result of ongoing exertion; is not alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social or personal activities AND

Four or more of the following symptoms that persist or recur during six or more consecutive months of illness and that do not predate the fatigue

Self-reported impairment in short term memory or concentration

Sore throat

Tender cervical or axillary nodes

Muscle pain

Multi-joint pain without redness or swelling

Headaches of a new pattern or severity

Unrefreshing sleep

Post-exertional malaise lasting over 24 hours

Chronic fatigue syndrome is most commonly found in young to middle aged adults, and it is about twice as common in women than men. The prevalence of this syndrome is estimated to be under 10 percent of the population. (2,3)

The most common conventional treatment options include cognitive behavioral therapy (CBT) and graded exercise therapy. While some patients experience relief with these therapies, there is always a hunt for better therapies that provide more relief. The role of the hypothalamic-pituitary-adrenal (HPA) axis may be an important new treatment approach that should be explored.

Chronic Fatigue Syndrome and the Hypothalamic-Adrenal-Pituitary Axis

The HPA axis is the body’s control center for reactions to stress, and in turn regulates many other body functions like digestion and immunity. When we interact with a stressor, the body releases a cascade of hormones which eventually reach the adrenals and stimulate the production of other hormones like cortisol (the main stress hormone), dehydroepiandrosterone (DHEA), and aldosterone. These hormones work to keep blood sugar elevated and helps the body retain sodium and fluid so that blood pressure stays high and blood sugar levels can keep up with the fuel demands of the brain and other vital organs during times of stress. This process is important in maintaining life in a true “fight or flight” response, but in the modern world we constantly activate the HPA axis for small stressors like traffic or missing our train. With constant activation, the adrenals can become “worn-out”. Someone with hypoadrenalism will experience fatigue, depression, and low cortisol levels – all markers that are similarly found in chronic fatigue syndrome.

HPA axis dysfunction is not currently evaluated in potential chronic fatigue syndrome patients as part of the diagnostic process, as evidenced by the CDC criteria listed above. However, looking at recent research, it is clear that HPA axis function is an important part of the symptoms experienced by CFS patients.

Hypoadrenalism (low or “worn out” adrenals) in its most severe state presents as Addison’s disease, which in industrialized nations is most commonly caused by an autoimmune attack of the adrenal glands. In Addison’s disease, some or all of the adrenal hormones are not produced in sufficient amounts, which as you can imagine, causes many problems including fatigue, anorexia and/or weight loss, nausea/vomiting, hypotension and/or postural hypotension, muscle and joint pain, salt cravings, sexual dysfunction, and psychiatric symptoms.(4) Chronic Fatigue Syndrome and Addison’s disease have many overlapping symptoms, the most important of which is fatigue.

Both Addison’s disease patients and CFS patients show low cortisol output. Morning cortisol levels measured in the saliva have been shown to be low in CFS patients (5), and 24-hour urinary free cortisol is also lower in CFS patients than controls. (6) CFS patients are likely to have undergone early trauma (7), which, even in healthy adults, is associated with lowered HPA axis reactivity. (8, 9) The lowered HPA axis reactivity often found in CFS patients with history of trauma is associated with having increasing symptoms compared to CFS patients without a history of trauma. (10)

Despite this research, it’s still not clear whether HPA axis dysfunction is a cause of CFS or if it comes as result of the condition. Nonetheless, it has been proposed that HPA axis dysfunction in CFS is a vicious cycle, meaning HPA axis dysfunction may be involved in the genesis of CFS, but it also propagates ongoing symptoms once the syndrome manifests. (11)

Whether HPA axis dysfunction is the chicken or the egg in CFS may be determined by future research, but for those of us trying to deal with it today, it’s important to determine whether normalization of the HPA axis improves symptoms. Treatment with replacement doses of hydrocortisone have been shown to be helpful but at the expense of adrenal suppression, (12) while treatment with low dose hydrocortisone (5 or 10 mg daily) was shown to be effective without associated adrenal suppression. (13) Another study showed that symptom responders to low dose hydrocortisone (those whose fatigue levels were reduced) showed significant increases in cortisol to human CRH, which reversed the previously observed blunted response compared to non-responders. (14) Though there are limited studies on hydrocortisone treatment of CFS, these studies show that improving cortisol levels is likely important in reducing symptoms.

Improving HPA Axis Activity Naturally

Because there seems to be a connection between HPA axis functioning and CFS symptoms, it is important to make sure that your adrenals are working their best. Pay special attention to the lifestyle factors like sleep and stress reduction with mind-body activities for the best results. These are perhaps the most important (and most overlooked) factors for recovery of adrenal function and improvement of CFS symptoms.

Adrenal Testing

If you have been diagnosed with CFS and don’t know how your adrenals are functioning, it’s an excellent idea to do a salivary adrenal panel which will measure your cortisol output over four different intervals during the day. This is different from having your cortisol level tested at the doctor’s office, as that is a one-time test and doesn’t give you the picture of what the adrenals are doing the whole day. In some states, you can order your own test kit from directlabs.com. Otherwise, you’ll have to have your healthcare practitioner order one for you.

Diet

A healthy whole foods diet that minimizes food toxins and emphasizes nutrient dense foods (such as the Paleo diet) is an excellent start. A diet like this will be high in many of the nutrients important for the CFS patient which help the HPA axis function including Vitamin C (15,16,17) magnesium, (18,19,20) pantothenic acid, (21) and pyridoxine (22).

Patients with CFS who are on a Paleo diet may want to consider increasing their sodium intake. It can sometimes be difficult to consume a lot of sodium, and those with CFS and/or hypoadrenalism should be sure to get a fair amount of it so as to minimize the symptoms of low blood pressure. If low blood pressure is a concern it may also be a good idea to supplement with licorice root which potentiates the action of cortisol. (23) Note that licorice root supplementation is contraindicated if you have high blood pressure.

You’ll also want to consume foods (or supplements) with probiotic bacteria, such as kombucha, kefir, yogurt, and sauerkraut. It has recently been shown that the gut flora of rats has an effect on the HPA axis. Rats that had no exposure to microorganisms (germfree; GF) had significantly higher ACTH and corticosterone responses to restraint stress than did rats with normal gut bacteria. (24) Another study in rats showed that those exposed to endotoxin (like that which a human would be exposed to if they acquired a pathogen) displayed altered HPA axis activity. (25) Stress is known to alter the gut microbiota, and in turn this change alters the HPA axis. (26) It seems that normal gut flora is required for proper HPA axis activity and that clearing of pathogens and replacing lost beneficial bacteria with probiotic supplementation will likely benefit those suffering from HPA axis dysfunction.

Mind-Body Medicine

It has been shown that those of us who are highly neurotic and who experience depression and self-consciousness have blunted responses to stress tests. (19) When we work to change these thoughts and behaviors, we can start to re-train the HPA axis and feel better. Mind-body medicine techniques can help to re-train the HPA axis. Yoga, in particular, can help to reduce anxiety, depression, and perceived stress. (20) In a study on mindfulness-based stress reduction, 40% of participants had abnormal cortisol secretion patterns before the intervention and afterwards there was a change to a more normal cortisol rhythm. (21) The important thing is to find a mind-body medicine technique that you enjoy and will do on a regular basis. The more consistently you practice, the more benefits you’ll receive. Some examples include tai chi, meditation, deep breathing, biofeedback, the Feldenkrais method and more! Try them all and find out which one you like best.

Sleep

If you have chronic fatigue syndrome, don’t overlook sleep! Sleep deprivation and disordered sleeping cause HPA axis hyperactivity, (22) so make sure to get to get at least 7-9 hours nightly, and try to go to bed at the same time each night. Chris has some great tips about sleep in his upcoming book, Your Personal Paleo Code (published in paperback as The Paleo Cure in December 2014), so be sure to check that out! You can also read more about better sleep on this site here.

Time Management

Another successful strategy that helps a lot of my patients is practicing time management skills. A lot of us tend to run around like chickens with our heads cut off, trying to do everything at once but actually accomplishing very little. With proper time management, you can find time to fit in proper sleep, mind-body medicine, and make delicious, healthy meals and you’ll probably find that you get more done in less time. Check out both of Chris’ podcasts about time management here and here for more information. When we know exactly what we should be doing at any given moment, we spend a lot less time procrastinating. Plus, when we’re getting things done our stress level goes way down, helping the HPA axis to function more appropriately.

Now I’d like to hear from you. Do you have Chronic Fatigue Syndrome? What are the strategies you use to reduce your symptoms?

This is a guest post written by Kelsey Marksteiner, RD. Kelsey is a Registered Dietitian with a Bachelors degree in nutrition from NYU, and a Master’s degree in Human Nutrition and Functional Medicine. She works in private practice and recommends individualized dietary therapy focusing on biologically appropriate diet principles to aid her clients in losing weight, gaining energy, and pursuing continued health. She is a firm believer that everyone is different, and she tailors her plan for each and every individual. Through her work, she aims to meld the dietary wisdom of traditional cultures with the latest science in integrative and functional medicine to create plans for her clients that work in the modern world. You can learn more about Kelsey on her staff bio page, or by visiting her private practice website. Join her newsletter here!

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It’s now been 21 years since my “accidental” CFS “cure” in the form of aggressive prescription Cortisol meds given to treat severe asthmatic symptoms unresponsive to the usual inhalation treatments, epinephrine injection, etc.. Folks, either CFS is connected to the same “unexplained chronic-fatigue” condition known for centuries, or it’s something new and novel. In the eighties, CFS symptoms always included those of hypoglycemia and IBS along with all the others. CFS always had a definite onset, and always followed a “trigger,” such as virus, unusual stress, injury, etc.. For some reason, the “stress-hormone” connection alluded to in this article is still being largely overlooked, despite the obvious low-cortisol/high-epinephrine stress-hormone imbalance indicated by virtually every symptom and possible cause.

This comment is really valid. My (UK) family doctor and endo both refuse to accept any connection between HPA dysfunction and my ongoing symptoms, only offering antidepressants for the pain, which is standard UK treatment. This is despite my morning salivary cortisol being really low (privately tested, the UK national health service doesn’t believe in saliva testing!), because whenever I have an adrenal function test (short synacthen test, insulin stress test) my response is really strong. Does anyone else have a similar experience with provocative test results which absolutely do not mirror their day to day experience? Do Kelsey or Chris have any views on this, please?

Hi Olivia, Suggest you try a simple at-home blood-sugar test and if your morning fasting level is abnormally low, you probably have “non-reactive” hypoglycemia which is often caused by low cortisol. If this is the case, find a doctor who will get you some prednisone and try 5mg/day, (with a good breakfast) and see what happens . . .

Hi, Ron, and thanks. I have not been able to find any doctor in the UK who will prescribe either cortisol or any of the derivatives (you suggested prednisone) unless the patient (me!!) is definitely Addisonian. They won’t even prescribe corticosteroids for RA any more, preferring to offer anti-malarials, instead. The whole concept of low dose cortisol is alien to them – and, yes, I have handed them all the relevant info from Dr Jefferies’ book, too. I’ll have to look into the non-reactive hypoglycemia, though I’m not sure what good it will do given the above, but can at least assure you that I have a good breakfast! Thanks again.

Hi again, Wow, this really IS the “taboo” treatment-option. I was very fortunate to correspond (and have one phone conversation) with Dr. Jefferies in ’94 and he was the “real deal,” one of the pioneer researchers to use Hydrocortisone (cortisol) in clinical tests and in his own private practice, which led to his medical textbook “Safe Uses of Cortisol” which became my “bible” following my accidental 4-day complete recovery from a 7-year bout of CFS which in my case followed a severe respiratory virus combined with a period of unusual stress (extreme work-load and finishing-up my first jazz-CD). I knew nothing about adrenal stress-hormones and at first, thought I had accidentally treated some “inflammatory” condition, but slowly all my symptoms began returning and I was determined to stay healthy, leading to my research and long-term, low-dose Cortef and eventually prednisone which I tapered off. The blood-sugar testing was the icing on the cake, as I believe “non-reactive” hypoglycemia to be key to this low-cortisol form of CFS.

Hi Ron Robbins, I believe I’ve had CFS since the age of 23 and still have it (i am now 27), my guess is my trauma of a dying loved one is what did it.

I just remember sitting down one evening eating my dinner not long before going to sleep and i suddenly had a crazy head rush and was overcome by pure weakness, at first i was scared i had a blood clot in my head. The head rush was a precursor to the rest of my symptoms.

The prime symptoms of my health problems was sudden leg and arm weakness. The whole arm/leg weakness is supposedly a common first sign of CFIDS that people get. Now i am seeing an endo privately. This is because I found out i had low cortisol saliva results; the lab said i have hyperglycemia and circadian rhythm type issues.

It is upsetting because i have lost many things from having this disease, i will end up going bankrupt before long due to having no diagnosis or cure. It has robbed me of my strength and energy. So i guess my question to you is; what can i do? Are there certain blood works i should go for to narrow down the problem?

Some have suggested me supplements (which i take currently) and some did suggest getting hydro-cortisone from the states but i have put off HC until i know more. Did you ever recover from CFS? Thank you very much for your time if you choose to reply.

Jay, I’ve never seen or experienced your extremity-weakness symptoms and never saw that on a CFS list. What you describe sounds more like a mild stroke or something, not to alarm you. And if you already have high blood-sugar, taking any form of cortisol would only raise that even more. Not diabetes? Luckily, I consider myself “cured” although I was on a synthetic cortisol for 7 years which kept me free of 11 symptoms. Hopefully you can get fully checked out and get to the bottom of this, good luck!

Hi Ron, thanks for the reply and suggestion. I typed hyperglycemia by mistake due to mind fog and not thinking properly.

To correct myself the lab said “levels reflect a degree of adrenal fatigue especially in the area of glacaemic control”. I am thinking this is why i often wake up with “extreme” hunger and thirst and sometimes fall over when i suddenly get up from lying down?

My endo is doing a blood glucose fasting test next time i see him, i have noticed above you said getting that done is important.

I went to a few forums online where people reported weakness in legs and arms as CFIDS. On the evening i got this i went to accident and emergency at my local hospital, my BP and ECG was completely normal.

I just remember one of my arms was shaking violently and one of my legs was feeling ice cold.. but my brother said my leg did not feel cold when touching it on the outside.

I had a head MRI a month after this to see if i did have something going on. MRI came back fine and showed no problems/damage, even had a full essential blood test, all came back fine. But still i have memory, concentration and brain fog issues.

It is baffling. Currently the adrenal/pituitary(cortisol) supplements i take make me feel somewhat better, i can walk further than i used to (less fatigue).. but my weakness just seems to be always there and doesn’t seem to actually improve.

Having said that i am confident its something hormone related.. my muscles shake like crazy after exercise or when I’m going to sleep including tremors etc.

When two people are arguing in front of me my body curls up and starts shaking as if it is under attack. Fight or flight syndrome was my thinking as soon as i noticed that, i easily get angry and aggressive now since that time i first got CFS (that is providing that is what it is).

Prior to that i was doing meditation and teaching relaxing techniques to my students/clients, i was the most calmest person ever, nothing could rattle me at all. However nowadays an extremely calm person as myself gets easily annoyed and feeling under attack at things that would never have used to be a problem.

This is why I’m convinced its definitely hormones and not respiratory/circulatory related.

Anyway i will leave it there, I’ll see how it goes with my endo and report back. Cheers

Hi Jay, Thanks for your reply, and maybe you have Addison’s Disease and really need HC replacement? Do you happen to know what your fasting blood-glucose level is? You don’t need a doctor for that, can test with a home device. And, how much HC do you take?

Hi Olivia, I am wondering if you got anywhere with this since your last post? I am also from the UK. I just wanted to tell you that you are not alone, my morning cortisol level was super low.

I am getting some test done by my endo in a few weeks that uses injections and takes 6 hours to do. I wish i knew the name of it, i thought it was maybe the synacthen test they ordered but when i remember him saying the word it sounded different, the name was much longer sounding.

My endo was open to the idea of me having a saliva testing and seemed content with the idea (I’ve gone private), the NHS i find useless in terms of getting what i need and just dont seem interested in getting to the bottom of these issues, they seem to only offer anti-depressants and ibuprofen; as if any of that band aid solution stuff is going to do anything!

My private GP has been helpful but insists he does not know much about CFS except that he met a very good specialist in Belgium who “cured” an English girl with severe CFS, she was in a wheel chair and everything, now she is running and everything. I have considered her someone to take a chance on in the future if i see no improvement this time next year.

Hi all, I am not here to say anyone’s wrong or right and I have read every single post and have learned a lot. I don’t want to say anything about anyone’s statement because I think all of us together fighting for a cure is the best thing that we could ever do for eachother. Listen to everyone and keep an open mind because you never know what Information will lead to a cure for each and every one of us wether it be that CFS is caused by one single source which I highly doubt but that’s my own opinion. I was bitten by a tick when I was 21. I knew nothing about Lyme disease and I mean nothing. I developed a circle rash but it was very small actually. I thought it was ringworm to be perfectly honest. So , I purchase medicine for ringworm. When I applied the medicine to the ring worm and it kept growing to the outer edge of the medicine. Eventually it grew to the size of a can of soda. I showed it to a friend that was a nurse and she said OH MY !! That’s the Lyme rash!!! I flipped out lol. I immediately went to the ER where 10 different doctors came into the room and all acted like they had never seen it before and I was a specimen in a science class project. Truly felt like an alien. The doctor gave me two weeks of antibiotics and sent me on my way. He said take the antibiotics and you will be fine. I took the antibiotics, the rash went away and I was cured!!!! No follow up visits, no blood tests was ever done and I Never thought about it again and never talked about it again for a long time. After that about (2 months at the most) I started having terrible symptoms. I only weighed 125 lbs so weight had nothing to do with my illness and pain. I had always been athletic so to speak. My back started to hurt, every joint In My body started to hurt, I had terrible neck pain, headaches. My knees would literally go out of joint so bad at times I could not take a full step without bending my knees slightly five or so times before they would go back in Place and So I could take a full step. I had muscle spasms In my back so bad it literally looked like someone went thru my stomach and it looked like their fingers were trying to poke thru my skin on my back and they would move up and down both sides of my back. It was really scary to even watch this happening. At times it felt like someone was pouring hot water thru my veins in my neck. I would be so confused and Brian fog isnt even close to the word to explain how I was feeling mentally. I would go shopping and know exactly what I was going to buy as I would write the good old list. So I am going to get chicken breast and I would find myself down In the steak section just standing there like I was lost. Then I would snap out of it and look around and tell myself , what the heck are you down here looking at steaks when I was going directly to get chicken breast. I developed a peptic ulcer and my doctor told me it was stress I was feeling In my belly and he gave me Xanax and Zoloft and he said I was depressed. I told him If could only figure out what this pain was in my belly I think I would be just fine. I had never been to a dr be of this. Only ER visits for stitches once or twice In my life and when I was bitten by that tick. This doctor stuff was all new to me and I really didn’tike it at all. Well the acid from my stomach ended up burning my throat so bad I had to have throat surgery. At the follow up with the throat dr that did the surgery, he asked me if I had ever had an upper GI? I said what’s that??? He said it’s where you drink this liquid and we take pictures of your stomach. I said no but lets do it because I know something is wrong in my stomach. They found I had a peptic ulcer after 6 months of its all I. Your head bull crap! I thought my girlfriend was trying to poison me and every stupid thing you could possibly imagine. My muscles would twitch all over my entire body 24/7. I was down to 108lbs and my father asked me if I was on drugs. I said dad, I wish I could tell you yes. Atleast that would be a reason for all this craziness. This lasted about a year and the major symptoms started to slowly go away but never fully. Again, I knew nothing about Lyme disease and the symptoms until I was 36 years old. I was bitten by a tick again and Now I had a computer!! So I started researchIng Lyme disease. OH MY GOD!!!! I took a hard look back and I had just about every single symptom that was listed. Remember, I took that few weeks of antibiotic, the rash went away and never once did I think anything that went on in my body had anything what so ever to do with the tick bite. I have developed hypothyroid, chronic pain, Insomnia, total numbness in my hands at time but no sign of carpul tunnel as I have been tested for that along with the possiblity of a pinched nerve In My neck. I have had every blood test to check for everything I that could possibly cause these symptoms and everything comes back negetive. It’s all in my head. That’s l I want to do is be sick. If you met me you would know in twenty seconds that this is not the way I live my life. Lyme bacteria hides in our body and the tests only check for antibidies. Well , if your immune system doesn’t see a foreign Invader it doesn’t make the antibodies that these testes look for and if you don’t have antibodies guess what ??? You don’t have Lyme disease!!! Totally and absutley the furthest thing from the truth. I do not want to push my illness and symptoms on anyone and hope none of you have it, or ever get it. All I can say is PLEASE just look into this disease. If your a skeptic, go to YouTube and type in my horrific Lyme diseased blood and watch the entire video and listen very closely to what the man is saying. And if you want the entire truth about Lyme disease type In dr macdonald and Lyme disease. He has multiple vidoes on YouTube. He isnt selling anything , promoting anything. All he does is give you Information that will blow your mind about this disease. From how it started all the way thru to how it’s found in the Brian of Alzheimer’s patients that donated their body to science and he has the pictures and the proof to back up every one of his statements. Knowlege is the best thing we can all do for ourselves and for our loved ones. This is truly a government (CDC) cover up and as far as I am concerned the biggest money maker for the medical community that exists till this day and I really think they want to keep it just the way it is. If you do nothing at all and never think about Lyme disease again In your life just please do this for yourself and for your loved ones. Please look at these videos and listen to everything this Dr has to say and I mean everything. For your own good! I don’t know what causes CFS, FM, MS and l the other diseases but I think the government does and has a major role in all these diseases and I am sorry if no one agrees with me and I have no hard feelings towards anyone who does not agree with me. All I ask is just listen and look at this Drs videos, look at the proof he gives in great detail then make your mind up as to what you believe is going on. I wish every one the best of luck with your health and I wish for a cure for all disease but as long as there is BIG pharm. That’s never going to happen!

I enjoyed your article & learning more about this body illness. Back at the end of 1997–99 both myself first, then eventually my husband were dx with FMS. We both at different times had a unusual virus that was unexplainable but mimicked Lyme to some degree. Mine lasting 3 months, his about a month. My symptoms were more aggressive. Eventually, due to very highest of the levels of stress continuing in my life, I became sick. Resulting in being given the dx of FMS. Now, knowing what I do, the way my body is, I know I have AF, adrenal failure/CFS. I have pain but my fatigue over rides that. The hardest part to having such sever fatigue is wanting to eat right, or exercise but not having the energy or stamina any longer to do the right things. Having a spouse with a similar illness, his is more neurological due to a head injury, at least we live in harmony. Messy but understanding each other, We can’t even motivate each other. It’s a vicious cycle of trying to be in control of a life we really have no control of.

Hi Jeanne, I was just reading your post and wondered how you guys were doing. I know that in my own case, I wasn’t even able to read, write, or research anything for most of the seven years I was sick, and was very fortunate to discover the stress-hormone connection in an accidental way. In the last three years of my CFS, I can honestly say that along with all the other symptoms, I had absolutely not one minute of normal deep sleep, which definitely kept the cycle going. Normal cortisol levels are necessary for normal serotonin levels which are needed for sleep. Also, normal sleep is necessary for normal cortisol levels, what a vicious cycle! The avoidance of low-dose cortisol meds and “mild cortisol deficiency” as diagnosis is baffling after all these years and supportive work of other doctors around the world who were “students” of endocrinologist Jefferies.

Here was a great informative article on CFS and its stress-hormone connection, and sure enough, it became a forum for every crazy detour and tangent, not related to the topic at all. Mental issues, vaccines, mystery microbes, flaky treatments, probably even alien-abduction and chem-trails have been mentioned on this forum, while endocrinology is ignored. So go ahead and ignore the long history of “unexplained chronic-fatigue” affecting folks throughout the world, with obvious stress-hormone indications, verified by some wonderful, dedicated scientists and researchers, and follow every new internet trendy fad. What’s sad is, there are lots of real CFS patients out there who are missing the boat. Ciao!

Thank you for posting your own experience and cure here as it gives good information to others and offers hope. My feeling is that you really did have CFS and really did happen across a cure that worked for you and may work for others and is worth looking into. Some say that it is incurable and that if you were cured that you didn’t really have it in the first place. My CFS has largely gone now but can resurface and so I am interested to check out what you have recommended here.

All the conspiracy, vaccine, they did it to us mentality is I think part of the negative, victim mentality that can be part of the hopelessness that accompanies CFS, but it does get in the way of proper debate and gives ammunition to those who think that CFS sufferers are somehow mentally ill.

Thanks for your response! In the “old days” before internet, we didn’t have such easy access to info, but there wasn’t nearly as much “floating b.s.” around, either. I first learned about “non-reactive” hypoglycemia, for instance, from endocrinologist Jefferies’ medical textbook, “Safe Uses of Cortisol,” and became aware of its importance in CFS. I never would have imagined myself reading an endocrinologist’s book, but that was 20 years ago following my lucky accidental CFS cure that also began my new interest in stress-hormones and their underrated effects.

Talking about “victim mentality” is a red herring. Saying that if one thinks outside the box, that gives “ammunition” to people who claim CFS is “mentally ill” is ludicrous. If one doesn’t think outside the box, one lives in denial and ignorance.

As far as the cortisol perspective, it’s is just one more thing to add to a long list of things that a person with CFS can experiment with if they choose to. Debating it is a waste if time. If one wants to experiment with it, just do it. End of story.

The cortisol perspective is the only one that explains why 4x as many women have CFS (more delicate hormone balance), and is the only one that can account for the inflammatory and hypoglycemic symptoms that used to be a part of every diagnosis. And, is the only scenario providing a mode of treatment as opposed to endless new detours and wackiness we’ve seen pop-up over the past two decades.

The hundreds of thousands of people who are labeled initially with have gulf war syndrome go out on disability with the label of CFS. you think they have cortisol problem. most are men. There was a cover up of that also.

It is well known that immune system is up regulated and natural killer cells in most are very low… Were yours ?

I never had blood-work done when I was sick, and actually never found a local doctor who treated CFS. And yes, there seem to be lots of similarities with Gulf War Syndrome. Considering this forum was started by an article on CFS and stress-hormones, why not try and stay on topic a bit?

To lend some insight.. i am a guy with CFS, i believe most is caused by trauma of some kind, if we get too much in the trauma our body becomes sort of defunct from all that built up emotional tension we have. I think the reason women get it more than men in everyday circumstances is quite simple, i have worked this out myself.. women are generally more empathic due to their feeling function whereas men use thinking function more so women are basically juggling more things in their mind (a sort of universal responsibility) but they are also effected more by painful situations, for example a woman is more likely to get trauma from having a loved one pass away compared to a man. In my case i had a trauma over 3 years ago due to see someone die, i had a build up of depression and i ended up with CFS because of it. As someone said above though men can get this as well.. but the Gulf War syndrome thing is obviously due to trauma and all the input the body cannot take such as loud noises, cries for help etc etc. It is traumatic.

This is not me saying ALL CFS is about trauma but i believe much of it caused by trauma, i have however seen people who have CFS and they are adamant they were never depressed on getting it which might be more infectious in origin such as having lymes disease etc. CFS is simply our body going out of whack, i am hopeful that within the next 20 years (hopefully sooner than that) we will have a crack down on the research for his deadly illness, i just wanted to share this in case it helps. I study psychology for a living pretty much so i am 100% sure that women get CFS more in everyday situations due to taking on much responsibility for others (a woman is more likely to worry about everyone else than themselves). I am not putting this forward as some kind of “females are superior thing”, its biological and built in to women.

It is due to prolonged bottled up stress states.. prior to getting my CFS i didnt feel like living.. due to death of someone close to me and some other things that also made the situation worse. Being in the counselor field i have developed feeling function which most men lack but may develop later in their lives (look up Myers Briggs if you dont believe me). I currently on nutri adrenal extra supplements, they have helped somewhat with my CFS but i have yet to go the hydrocortisone route, but i am going to see what my endocrinologist says first regarding my ACTH test.

For whoever it helps..i think this is important consideration that anyone who has a dominant feeling function type personality is MORE likely to get CFS (look up Myers Briggs personality types to understand what i am getting at). I believe i am right in saying this but i would love science to test my theory correct to see if in fact i am right. Yes males can have dominant feeling function as well.. but usually females have dominant function more than men do on average. However i believe today we have very stressful lives that is allowing the illness to become more of a frequent pest. For all those suffering CFS (me included) keep fighting the good fight. I am sure the answers will come soon on how to combat this illness once and for all completely in great detail.

After taking hydrocortisone I developed a big ovarian cyst, then I googled and found lots of women having this same side effect. CFS is not adrenal fatigue, I even took adrenal supplements several times, they did not work, they are useless for CFS. Every single Naturopathic doctor I’ve seen wanted me to take those supplements or Cortef even though I told them that they didn’t work in the past. Who said that doing the same thing over and over and expecting different results was madness?

To my knowledge, ovarian cysts are not a side-effect of taking cortisol, and there isn’t a “naturopthic” doctor alive who recommends or could/would prescribe Cortef or any other prescription form of cortisol. One of the world’s greatest pioneering Endocrinologists, William Jefferies, was prescribing low-dose cortisol for “unexplained chronic-fatigue” way before the term “CFS” even appeared, and he personally counseled me in my own recovery 20 years ago. Everyone and their brother these days thinks they have CFS, but in the old days it required multiple symptoms, all sharing with those of “mild cortisol deficiency” and the related “non-reactive” hypoglycemia.

My ND works with an MD that can get the prescriptions of cortef for him. Also an integrative MD that studied naturopathy prescribed cortef for me. Yup, there are NDs alive that can advise the use of cortef.

Plenty of anecdotes stating that hydrocortisone caused ovarian cysts, I don’t think those are coincidence; more research is needed.

With all due respect, your particular CFS may not have a stress-hormone connection, but in the “old days,” there were a lot more symptoms correctly linked to the conditions, such as “Reynaud’s Phenomenon,” postural hypotension, hypoglycemia (non-reactive), irritable- bowel syndrome, etc., that all pointed in that direction. The discussion of CFS nowadays has strayed far from the decades of “unexplained chronic-fatigue” mentioned in the literature way before the terms CFS and FM ever existed. Is CFS some new illness, or is it largely a stress-hormone imbalance (with cortisol deficiency) that can occur from viruses, injury, stress, etc., and has probably existed since we lived in caves?

You are certainly entitled to your opinions. However, humans have always had stress-hormone imbalances, just as they’ve always had “unexplained chronic-fatigue.” After a seven-year bout caused by a combination of severe respiratory virus, stress, and overwork, I slowly developed a classic case of CFS, after being a complete skeptic as it was quite a trendy news-item in ’87. Seven years later, an unrelated hydrocortisone regimen given for severe asthma reversed these symptoms in four days; Irritable Bowel, neck/jaw pain and stiffness, total insomnia (no sleep at all for 3 years), brain fog, extreme light-sensitive eyes, nonstop headache (3 solid years), exhaustion, and more. My recovery was so dramatic, I went to my local university (UC-Irvine) to research hydrocortisone (cortisol) and possible link to CFS. That’s where I discovered Jefferies’ medical text, “Safe Uses of Cortisol.” What’s ironic is, I had been unable to read or research anything for years (headache and brain-fog) yet here I was soaking up “endocrinology.” My cure quickly started fading, until starting low-dose maintainence for several years, with Dr. Jefferies’ support.

Hi again, Most doctors are still opposed to low-dose cortisol (hydrocortisone) long-term therapy, but most will probably indulge you with a short trial. If your symptoms have all the “classics,” including inflammatory and low-blood-sugar ones, see if you can get a dose-pack of Medrol, a synthetic cortisol often given for various inflammatory conditions. Jump-start with a hydrocortisone shot, if you can. Or, simply get on a trial of 5mg. prednisone daily (equal to the 20mg hydrocortisone Dr. Jefferies prescribed). I slowly tapered-down to zero pred. but it took me 7 years! Not generally accepted treatment by mainstream medicine, and very much opposed by the “natural-healing” folks, but it worked for me and others. If you can find your fasting blood-sugar level, that’s helpful also. Then again, you can go the whole “endocrinologist” route and get all the hormone tests, hoping for an open-minded stress-hormone CFS-approach.

Try a simple blood-sugar testing device and if your morning fasting level is abnormally low, you might simply try 5mg of Prednisone/day for two weeks and if you feel markedly improved this protocol is similar to Dr. Jefferies’ (he used the equal strength 20mg. hydrocortison) and hopefully you can gradually taper-off the dose while your stress-hormone levels normalize. In my case, this took 7 years but hopefully yours isn’t going to be this stubborn! Take it first thing in the morning before a good breakfast and watch your blood-sugar levels improve.

I had a Naturopath doctor prescribe Cortef for me. I took it for approximately five months. It helped but I have found each “stage” has taken something more to heal. The biggest help has been a gluten free, whole foods diet. Then I had a hormone specialist balance my hormones and I had a few more symptoms improve. I eliminated my normal lotions and shampoos and replaced them with toxin free substitutes and my dizziness improved. I find it is a work in progress for me. And by the way, I did not receive a diagnosis for CFS, although I have all but two of the symptoms. I have been searching for a diagnosis for three years. I may never get a diagnosis but I will heal if I have anything to do with it – which I do:)

I have had CFS for 14 years and my adrenal hormones were out of balance, I think it was low DHEA and low Aldesterone, I can’t remember exactly which ones at the moment. But I couldn’t get any doctors to go along with DHEA low dose treatment in my area so I was out of luck.. I started to take a product from America (Plexus Slim) which has it’s main ingredient as Alpha Lipoic Acid. It is supposed to help people with diabetes balance their blood sugar and hormones. It also is supposed to help some people with ADD which I have had trouble with. My wife insisted that I give it a try and within 24 hours I noticed an immediate improvement but because I was detoxing so fast I had to take 1/2 the suggested dosage and I have steadily improved in energy and staying power over the last few months. I can actually do ok on one half dose every second day. Alpha Lipoic Acid may do the same thing and I will be trying that out as this other stuff isn’t exactly cheap. Just thought I would add this as it may help those who have adrenal hormone imbalance with their CFS.

Just because a condition is more prevalent for women does not suggest that is caused by hormonal issues. Below is an example about Fibromyalgia, many CFS patients suffer from fibro as well

“Some authorities believe that 4% of women and 1.5% of men in America have Fibromyalgia. The NFA (National Fibromyalgia Association) gives a conservative estimate of six million sufferers. Women are far more likely to be diagnosed with the condition than men. This may be because they are built with smaller bones and therefore have smaller tolerances in the areas that cause Fibromyalgia. This leaves them much more susceptible. In addition they participate in all of the same sports and drive all of the same motor vehicles as men, and are subject to the same traumas. Logically, then, in any accident they would be likely to experience more severe damage to the skeletal structure.” Dr. Matt Lanum dc

I don’t understand all the denial about hormones issues affecting more women than men. Maybe CFS is somehow linked to wearing makeup? Or dresses? As Dr. William Jefferies pointed out in his medical text, “Safe Uses of Cortisol,” the anti-inflammatory/anti auto-immune benefits of cortisol (Hydrocortisone) were first discovered by accident when it was found that some womens’ arthritis improved during their pregnancies and it was found to be due to naturally-elevated cortisol levels. This led to the first pharmaceutical use of HC in the forties.

Also correlation is not causation. The theory of structural issues causing CFS would suggest that women are more affected because of a smaller more fragile frame. But again correlation is not causation.

I don’t understand all the denial about hormones issues affecting more women than men. Maybe CFS is somehow linked to wearing makeup? Or dresses? As Dr. William Jefferies pointed out in his medical text, “Safe Uses of Cortisol,” the anti-inflammatory/anti auto-immune benefits of cortisol (Hydrocortisone) were first discovered by accident when it was found that some womens’ arthritis improved during their pregnancies and it was found to be due to naturally-elevated cortisol levels. This led to the first pharmaceutical use of HC in the forties.

Regarding sleep, this article recommended patients make sure and get 7-9 hours of sleep . . . . easy to say, impossible to do when our stress-hormones are out of whack, namely, low-cortisol and runaway adrenaline. Also, normal cortisol-levels are needed for normal serotonin, so important for sleep. I personally experienced years of a resting heart-rate over 100, racing-heart being not exactly a restful experience. Conversely, deep sleep is needed for our bodies to produce adequate cortisol. Plus, adequate cortisol is needed to main- tain blood-sugar levels, and when that drops below normal, more adrenaline is produced, leading to more racing heart- beat, anxiety, and less sleep!

Just to review from “CFS” back in the day . . . . . It always had a definite onset, along with typical causes, such as; virus, unusual stress/trauma, or combination. It was much more likely to affect women (about 3-1), lending credence to a hormone-connection. Many CFS symptoms mimic those of mild-cortisol deficiency, as well as “non-reactive” hypoglycemia. Cortisol, our body’s natural “stress”-hormone, has anti- inflammatory, anti-auto-immune effects, and is essential for maintaining normal blood-sugar levels. Cortisol plays a balancing role with our other major stress- hormone, epinephrine (adrenaline). Cortisol (Hydrocortisone), has been found to be deficient in CFS, and physiologic doses has been also found to be helpful in its treatment. Both the medical establishment and “natural” health-practitioners have traditionally been opposed to the use of long-term cortisol supplemention, even in small doses which mimic our body’s own production of this amazing hormone, which is necessary for life.

i’ve been doing an antifungal protocol for about two months now, and for the first time in several years my CFS is improving. so too is my mood, my digestion, and a variety of other conditions. here is a blog post i put together about the first few weeks:

there is no single cause for CFS in my opinion, but fungal overgrowth is a clear problem for many who have taken antibiotics or inherited damaged gut flora from a mother who did. we suffer further from antibiotics in the food supply and chlorinated water.

fluoroquinolones, especially, like cipro and levaquin, they wipe out the barrier bacteria that keep candida from leaving the gut and going systemic. they destroy our sinus microbiota, which leads to fungal sinusitis. this alone can cause huge fatigue.

i’ve seen evidence it’s made worse when people adopt a ketogenic diet, or a VLC diet, in an attempt to starve out yeast/fungi. this has been my own experience. chris kresser has written some great articles on the dangers of being too low carb, as has paul jaminet. for one thing, it seems candida loves ketones, and too few carbs can cause a deficiency of protective mucus in the gut.

so in addition to my aggressive antifungal protocol, i’ve been making sure i’m a glucose-burner, by eating white rice and potatoes in modest amounts, and this has helped on quite a few levels.

good luck to us all suffering with CFS. i am not “well” yet, but after the last few weeks, i do think i can get there. don’t let anyone tell you there’s no cure!

i am pretty sure the reason these remission rates in the study above weren’t higher is because of limits in the study. those of us who have done FMT ourselves know it can take months of treatments before the new bacteria penetrate existing biofilms and set up shop in their new home.

POTS is actually dysautonomia with neverending ever changing symptoms with no rhyme or reason. While I demonstrated “classic” POTS symptoms during tilt table test, not everything was so classic about it. I passed out in a normatensive state, meaning my blood pressure did not drop. It was not investigated further. Hundreds of research hours while unable to work or even live /vs. Exist/ my life brought me to the conclusion that I have dysautonomia. And I do have CFS. At times the only thing that is alive in my body is breath.

Ah, I didn’t understand about POTS. Back in the day, listings of our CFS-symptoms would often include “postural hypotension” which I think is similar. This was one of my minor issues, compared to the others! Here’s the cortisol-HPA connection once again, as low cortisol doesn’t enable our adrenaline receptors to function properly. My first-hand experience relating to this came when an epinephrene (adrenaline) injection given for asthma had no affect at all. I found out later, this was due to my low cortisol levels. Evidently, adrenaline plays a large role in regulating blood-pressure, heartrate, etc.. It plays such a balancing act with the the other main stress hormone produced by our adrenal cortex, cortisol.

Terry,I finished reading your blog and found it quite interesting. I was diagnosed with POTS, not CFS, but the symptoms such as anxiety, agarophobia, unexplained tension of body and mind, stuffed head, oh my, exactly what I have on top of the POTS symptoms. How do I know if I have Candida? I have not taken antibiotics in years. I blamed gut fermentation and associated trapped gas and severe pains in my back, between shoulder blades on H.Pylori. Despite the healthiest diet my morning tongue is heavily coated.

i’ve been doing an antifungal protocol for about two months now, and for the first time in several years my CFS is improving. so too is my mood, my digestion, and a variety of other conditions.

2014/09/19/lufenuron-healing-pots-anxiety-introversion/

there is no single cause for CFS in my opinion, but fungal overgrowth is a clear problem for many who have taken antibiotics or inherited damaged gut flora from a mother who did. fluoroquinolones, especially, like cipro and levaquin, they wipe out the barrier bacteria that keep candida from leaving the gut and going systemic. they destroy sinus microbiota, which leads to fungal sinusitis. this alone can cause huge fatigue.

it’s made worse when people adopt a ketogenic diet, in an attempt to starve out yeast/fungi. chris kresser has written some great articles on the dangers of being too low carb, as has paul jaminet. for one thing, candida loves ketones, and too few carbs can cause a deficiency of protective mucus in the gut.

so in addition to my aggressive antifungal protocol, i’ve been making sure i’m a glucose-burner, by eating white rice and potatoes in modest amounts, and this has helped on quite a few levels.

good luck to us all suffering with CFS. i am not “well” yet, but after the last few weeks, i do think i can get there. don’t let anyone tell you there’s no cure!

I urge all “true-CFS” sufferers to check their fasting blood- sugar level first thing in the morning, as “non-reactive” hypoglycemia can be a big part of the disease, as well as being a link to “mild cortisol deficiency.” If you really and truly have CFS, as it used to be defined, do yourself a favor and follow the late endocrinologist Jefferies’ advice for patients with “unexplained chronic fatigue” as it used to be known. Find a doctor who will give you a hydrocortisone injection and a prescription for methylprednisolone dose- pack, and see how you feel after a few days. This was my “accidental cure” exactly 20 years ago, which I maintained with very low doses of synthetic cortisol and tapered down for several years. This is a departure from Jefferies’ regimen, but worked amazingly for me. I don’t want any part of all the weird arguments, natural remedies, delusions, medical controversies, etc., just consider it, as you have nothing to lose, folks.

Well, everyone’s different, and who knows if one person’s CFS is the same as another. No, no more experimenting for me, thanks. I’m celebrating 20 years since accidentally finding my cortisol-cure and Dr. Jefferies. I vowed to share my good fortune, and maybe it will help someone. Who knows what your particular medical issues are? good luck!

I wish I knew what had triggered the deterioration of my health. My first few visits to doctors ended up like that- with the way you look, 15 years younger my age, with your healthy organic diet, with your perfect weight, the envy of so many, you can’ t possibly be sick. Take anxiety pills.

Hi, the late, great endocrinologist William Jefferies was my mentor following my own accidental CFS “cure” some 20 years ago. He inspired several other doctors/researchers to explore the whole “mild-cortisol-deficiency” approach to CFS that’s still largely taboo and controversial . . . too bad!

I remember very well the NIH-study attempting to treat CFS with low-dose cortisol. It was around ’94, the same time I had just had my own “accidental cure” which led to my correspondence with Dr. Jefferies. NIH had mixed results, and did not condone using cortisol supplementation to treat CFS. Their study was so flawed, one doctor even wrote in to the Journal of the American Medical Association in protest. For most of Jefferies’ long career, he was alone in prescribing low-dose cortisol for his patients with “unexplained chronic fatigue” as it was known in the old days. The NIH, and medical establishment in general, has never tried to link CFS with cortisol-deficiency; in fact, they’ve always been opposed to this scenario.

“Safe Uses of Cortisol” by William Jefferies. Jefferies was one of the first researchers using low-dose cortisol to treat a variety of conditions, including what was originally called “unexplained chronic fatigue.” Other doctors have followed in his footsteps, but Jefferies was the original, and what a great guy and dedicated doctor he was.

Natural Calm’s newest spokesperson Sitara Hewitt talks about why magnesium supplements are the key to keeping her stress in check, and how simple rituals, healthy eating and a little exercise make her busy life manageable.

By Bonnie Siegler

After a kiss and cuddle with her four-year-old son, Sitara Hewitt starts her day by saying positive affirmations. “Miracles will happen.” “It’s going to be a great day.” Then she heads downstairs for a green smoothie. The Canadian actor, who has homes in both Toronto and Los Angeles, needs a regular morning ritual to level out her hectic days. She’s found that it’s the little things that can make the difference between chaos and calm. – See more at: http://www.vivamagonline.com/calm-amidst-the-hollywood-storm/#sthash.dg1a5i2N.dpuf

For anyone that has been given a diagnosis of CFS or chronic fatigue without any clear scientific testing to identify what is making them sick must read this paper here. This study is investigating a new biotoxin test for detecting mold poisons in patients with CFS. This is no bullshit and I had a doctor run this test on me and it came back positive.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705282/

What I found was that my illness was triggered by mold and after finding a doctor who treats mold and mycotoxin illnesses my health has been much improved. Certain pathogenic molds can colonize the sinus if inhaled and will start producing deadly mycotoxins that will cause an array of symptoms. Dr Ritchie Shoemaker has been one of the pioneers of treatments for mold illnesses. This article has some basic introductory information anyone with CFS should read. Shoemaker explains the cause of the push-crash phenomena or post-exercise exertion as well as a whole range of other seemingly unrelated symptoms that we call CFS.http://articles.mercola.com/sites/articles/archive/2012/07/22/mold-and-other-chronic-diseases.aspx

Shoemaker has identified a gene; HLA-DR that is responsible for the immune system recognising and removing biotoxins which include mycotoxins, endotoxins etc. Apparently about 20% of the American population carries a defect in this gene which means the immune system cannot properly recognise and remove these toxins. A serious exposure or chronic infection by mold in the sinus will mean that a person’s bioburden of mycotoxins will increase over time. The immune system will begin to sense the increasing damage being done by toxins such as Aflatoxins, ochratoxins & trichothecenes (these are especially neurotoxic) and this often lead to a chronic inflammatory response syndrome which will make the affected person sicker and weaker as time progresses.

Treatment requires removing the person from the toxic environment (water damaged and/or mold infested buildings), detoxing support such as Glutathione & N-acetyl cysteine, binders such as Cholestyramine (this will remove the toxins from the body & prevent their reabsorption) & antifunals to kill mold infections in the sinus. Antibiofilm support should also be added as Dr Brewer has found that sinus molds tend to live in collaboration with Staph infections. This ‘forest’ of microbes creates a sticky matrix that protects them from the immune system and antimicrobials. N-acetyl cysteine, herbal support & other bio-film busting treatment may be required.

RealTimeLabs can do a test for mycotoxins in the urine. The worst affected patients may not be even able to secrete tiny amounts of mycotoxins in urine (false-negatives have been reported) so it may be necessary to use a Far-Infrared Sauna and take glutathione before the test to start moving mycotoxins out of fatty tissue and cells where it can be detected. This here is another essential article to read & explains the neurotoxic effects of mold.http://www.drdaveou.com/blog/

I think most people with the disease may develop a secondary chronic disease FMS. This doesn’t allow sleep to have a restorative quality hence one wakes up as tired as one went to sleep. I remember sleeping 20-22 hours a days for many years. It was like a tse tse fly bit me. If one doesn’t have secondary diseases develop then restorative sleep may be possible and possible.

One aspect of sleep is environmental. Outside noise, emf etc, body pain, inflammation etc and mind chatter can interfere with sleep. GABA can address the latter.

hi, chris — Is there a possible biomechanical cause for CFS? i’ve spoken to quite a few others who have CFS/ME, ulcerative colitis, and other inflammatory conditions. nearly all of us have had a neck trauma that preceded the illness. i’m wondering if neck injury causes vagal nerve damage, and in turn that impairs the body’s ability to lower inflammation, disturbs immune function, and has effects on hormonal production, organ function, etc. thanks!

Physical trauma is not the primary cause. CFIDS is a microbe infection. If trauma were truly a primary cause, the incidence of the disease would not have exploded during the second half of the 20th century. Like many other chronic diseases. vaccines are where the real origin lies. Disabling and killing people mentally and physically were one of the primary purposes of vaccines.

I knew of a couple who were rear ended in an auto accident. Both developed CFIDS at the same time.

The theory of what physical trauma does is temporarily shutdown the immune system opening up a window pf opportunity for the infection to gain a stronger foothold of activity.

i wrote a blog post about it. what are your thoughts? is there a “gut/neck/immunity” axis we’re not seeing? especially in recent times, with text-neck affecting younger people, perhaps this is a driver of inflammatory disease we need to examine.

Great article, as someone who had chronic fatigue syndrome, low cortisol, sub-optimal adrenal gland function and what i suspect to largely stem from hpa-axis dysfunction/dysregulation, i couldn’t agree more.

Relora is a good herbal remedy for balancing the hpa-axis also i believe and offering stress support.

Hi everybody. I am 26 years old and was diagnosed with M.E/CFS just over a year ago. I find that the more information I read the more uncertain I am as to what my condition is all about and where it comes from. There are so many conflicting theories. All I can do is try to do right by my body, lots of rest, good balanced nutritional diet, and stress reducing activities such as meditation / mindfulness.

I also take a lot of recommended vitamins and Supplements; – Magnesium; a large dose before bed helps with restless legs – 5-HTP; before bed helps to sleep and is apparently good for reducing stress /depression /anxiety. – B vitamins; essential for immune system – omega fish oils – Vitamin E – Acidophilus (digestive enzymes) – d-ribose; to help with energy levels

My question is regarding Rhodelia; as M.E/CFS is not completely understood, I have no idea if my cortisol is high or low. I not only suffer from long bouts of severely low energy/illness, but I also suffer greatly after exercise in a way that I’ve not heard described before by fellow ME/CFS sufferers… A few hours after exercise I start to feel very uneasy, uncomfortable in my own skin, agitated, anxious, hot, EXTREMELY thirsty, unable to sleep.. This will last for 24 hours or more. It really feels awful and I become convinced that there is something potentially live threatening going on inside me. I have put this down to a spike in cortisol.

I have read some theories that say ME/CFS sufferes have low cortisol and some that say we have high cortisol. Either way I put this down to completely messed up adrenal glands. I am now terrified to exercise, even on a good day, out of fear of this feeling returning.

I am worried that taking Rhodelia could potentially make me worse if my cortisol is already high? But at the same time so desperate to find something which balances my cortisol, to then be able to exercise! Even a jog around the park with my dogs for 15 minutes!

If anyone could share their experiences or give any input I would be ever so grateful.

The reason for the conflicting information … DISINFORMATION campaign has been waged for over the last 50 years coordinated here and internationally. Most people with the disease, stick their head in the ground to what is going on hence most people with disease remain ignorant. Many ME/CFIDS groups forums are heavily censored. Many ME/CFIDS doctors themselves have helped cover it up.

I already gave information above on what you need to do to determine if you have the disease – get a ciguatoxin test. It isn’t expensive. It will help you determine if you have the disease for sure. If you are positive, it will explain why you have all the symptoms you do.

I followed the cortisol stuff a couple of decades ago regarding CFIDS – it is bogus. It was carried out for disinformation purposes by the NIH. You are going down a dead end. if you got ME/CFIDS, it is irrelevant.

I was personally helped by the late great endocrinologist William Jefferies, one of the first clinical researchers to work with hydrocortisone, following his stint as WWII flight-surgeon where he became fascinated by the effects of various stress/trauma on the adrenals. I first contacted Jefferies after my own accidental CFS “cure” following aggressive hydro. meds for unrelated respiratory infection/asthma. I maintained my recovery for 7 years, finally able to stop low-dose prednisone treatment which was a life-saver.

I’ve had what is termed CFS for about 12 years. I’ve tried it all. Bioidentical hormones, treatment for adrenal fatigue, biologics, megavitamins, complete change of diet, etc., etc. The only think that helped was antivirals. I was about 80 percent my old self.

Read the book Chronic Fatigue Syndrome: A Novel for more info on that. It’s on Amazon

One of the most perplexing factors with CFS is the confusion as to whether it is physical or all in the mind. In my opinion this factor is a very essential part of the illness.

Some diseases are clearly 100% physical and some much more mind based, but now more than ever it is understood that they effect each other and cannot be so easily separated out from each other.

I believe that CFS is uniquely placed between the physical and the mental in a way that no other disease is and that this must be understood in order to get well.

To say it’s all in the mind is I think wrong and very unhelpful. I believe that the causes are physical such as viral infections or other causes, but the chronic aspect is more mental.

In my case, and I believe many others, there was a belief that I will never be well again and that CFS is incurable. The effect of this belief on the health of the person is truly devastating and whilst held on to will ensure that progress towards good health is a long way off.

In my case there were times when my head would feel like it was going to explode from what felt like a very real pressure build up. I couldn’t concentrate, the fatigue was totally debilitating and I felt doomed. And yet sometimes I would practice mindfulness meditation during an episode and be totally shocked when all of a sudden it would lift and be gone in the blink of an eye.

Sometimes I would go swimming and come back totally exhausted and at other times be fine.

I began to realise that during an episode my thoughts were always very negative and doom laden, but the times that it could disappear in an instant made me realise that I couldn’t trust what I was thinking. my ideas about whether it was physical or mental were not reliable and were a part of the syndrome.

My health returned slowly as I eased up my thinking and also saw that I could take responsibility for what was going on for me and I didn’t need to be a victim to my own mind.

Now someone may say that I mustn’t have really had CFS because it can’t be cured. But I would say that this person should look closely at their own mind and the self fulfilling prophecies they have created for themselves.

I offer this post in the spirit of wellness and the ability of everyone to make their own miracles. At the same time I also reserve the right to be wrong and corrected.

This is a great feed on CFS, CFIDS, IBS, thyroid issues, and related issues. Just a mention on a few things that have helped me. I wont get into the details of my own health issues, so as not to be “accused or not accused of having CFS here on some commenters opinions, but just to say that I have suffered immensely, including being bedridden for several months at one point, for about the past 7 years. I am now 42 and have made IMMENSE improvements, can drive once again, (YAY) and I do have the feeling like I’m human once again, yet do suffer with setbacks or relapses. A few things that have helped me deal with several symptoms and infections are therapeutic grade essential oils. I have researched tons of brands, and found one that I like and generally reguarded as safe for internal usage is Young Living essential oils. They are amazing and can be used as antibiotic type treatment without the side effects. They don’t cause candida overgrowth in the gut. Also have used various blends for anxiety, depression, energy balance, adrenal or thyroid issues. they have been useful for me along with other therapies alone or in conjunction with other modalities. safe to take along with meds too. Hope it is helpful for someone.

I put the ciguatoxin information to help people find out what they have. Knowing what category you are in will go a long way to helping you figure out the solution to your problem.

Saying you won’t talk too much about your health because you don’t want to be “accused” is just plain silly. Either you have the disease or you don’t. I have given you a way to find out. Wearing the CFS label blindly is not helping yourself.

You are 42 years old but making such comments tells me you still haven’t reached maturity. I have run into many chronically sick people who rather stick their heads in the sand than confront the truth. Maybe I could have helped you with some specific problems but we’ll never know.

I have experimented a long time ago with a few essential oils. Never got any results.

You may want to look into taking 3 tablespoon of organic virgin coconut oil each day. This has helped some people in many ways whether you have the disease or not. See what results are in a couple months.

If you treat someone who has say heart disease or osteoporosis with CBT then it is fair to say that their condition will not improve or worsen. However if treating someone with CFS with CBT can drastically affect their health for the worse then this would seem to indicate strongly that the mind plays a very important part in the illness.

Gareth, you have pretty much shown what your agenda is – Make CFS a psychological disease.

Many people who write disinformation about the disease try to be ambivalent where on one hand they say there is a physiological basis while putting a psychological spin on it. This allows them to talk out of both sides of there mouth while they do the dirty work for the powers that be.

Damn it! i’ve been found out. Yes it’s true I’m part of a government body that aims to make sure that CFS is never classified as a physical illness. We also have lots of research money to give away to any scientist willing to distort their research to favor us. We also do a nice sideline in flu vaccinations that cause CFS sufferers to become paranoid and believe that the world is out to get them.

Gareth, CBT in itself is not harmful nor is it a cure for any disease including CFS or heart disease as you mentioned. The difference is someone with heart disease will never be told that CBT will cure them. Imagine if you had heart disease and your doctor offered you no treatment other than CBT. You take the program but when your health continues to get worse you are just told that its your own fault. That would be a harmful treatment for anyone.

Nice to see ME/CFS mentioned but as some one who suffers from ME/CFS it seems very, well, out of date. For one thing ME/CFS should be diagnosed using the stricter Canada criteria. Both CBT and, in particular, graded exercise therapy has had catastrophic consequenses for many. Leading to even further decline. Also, chronic fatigue and adrenal fatigue is NOT the same as ME/CFS. And the newest research is showing an autoimmune connection.

Yes, I´ve done the Gupta program with no sustainable improvement. B12 injections, paleo diet (eventhough I´m doing an elimination diet at the moment) is helping a lot with brain fog, cognitive ability and mood. Mindfulness is also helpful for manageing my situation.

I mentioned Gupta Programme in one of my earlier posts, here is more information about upcoming weekend workshops in LA and NY. I personally purchased the course and 3mo webinar. Take a look. There are many, many free videos on their site, plenty information before you decide if it is a worthy program. *LOS ANGELES* Dates: 29th – 30th March 2014 Times: Saturday 29th Mar 1pm – 6pm, Sunday 30th Mar 10am – 3.30pm. Venue: Hotel Near Los Angeles International Airport (LAX) Cost: $195 You can purchase your LOS ANGELES ticket here:https://www.e-junkie.com/ecom/gb.php?i=1314226&c=single&cl=94906

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I never said I did have chronic fatigue syndrome. I said I had “absolute fatigue” and “chronic constipation” :). About the vaccines, yes I did take my flu shot this year. I switched career positions from the clinical setting to the acute and I was threatened with being forced to wear a mask whenever I entered the hospital for an entire year. I know that sounds like a small price to pay but at the time I was still feeling terrible and between the sweltering hot flashes and anxiety I didn’t think I could stand it and just gave in.

Most of the medical community I have worked with have no problem with vaccinations and think it’s all conspiracy theory nonsense. I’m not going to speak about or for any of them. I have always placed a huge priority on continuing to learn and grow so I am always looking up things I don’t know or information that I just want to learn about. It’s so easy with cell phones and iPads, we have no excuse to be ignorant today. I also have a very healthy distrust of modern medicine and with good reason. I honestly think most doctors truly believe they are helping and doing good. I also think what they teach and what they are paid to teach in medical school is totally controlled by big business. There are still doctors that encourage mothers to give their 100lb kindergarteners three glasses of milk a day for nutrition. Cow’s milk is meant to take a baby calf and turn it into a 700lb cow in less than a year, not to mention all the hormones and antibiotic exposure that comes from consuming it. I’ve seen people who are on 30+ pills a day that keep getting sicker and sicker. A lot of it is flat out noncompliance but not all of it. I refuse to have blind trust when it comes health care and I always do my own research.

What I’ve seen with vaccines is very alarming. I would certainly have to devote more time and investigation to come up with a valid opinion though. I do know that there is something very wrong with the general health of America. Things have changed drastically since I started nursing 14 years ago. People are dropping dead from cardiac arrest in their early 40s, going into nursing homes in their 50s and 60s. I have a small group of friends, we are all in our early 30s and we all have chronic health conditions… Hypothyroidism, irritable bowel syndrome, one was diagnosed with testicular cancer after coming back from Afghanistan when he was 26. There is something wrong, I don’t know if it’s our diets and all the chemically altered processed food, GMOs, vaccines, growth hormones and antibiotics, toxins… Whatever it is we are seeing a shift and it’s scary.

I have eliminated dairy, eggs and gluten from my diet and have drastically cut down on sugar. I don’t use any refined sugar. I’ve switched to all organic meats and vegetables. I still haven’t given up my morning cup of coffee but it’s a cup today instead of two pots. I haven’t drank alcohol in years, good grief I felt like I was living in a constant hangover as it was, I couldn’t imagine adding that to deal with on top of everything else. Pretty much everything I eat now is very nutrient dense. I make sure to drink at least 8 cups of water daily. I’m in the process of converting to all natural personal care items like tooth paste, deodorant and makeup. I went to skindeep.org and all the makeup that I have used for years contained extremely toxic materials including known carcinogens and endocrine disruptors. Fluoride in toothpaste can be very toxic to some people. I’m also going to have all my amalgam fillings removed (apparently they contain mercury). I am taking a bunch of different supplements including an organic multivitamin (high amounts of zinc, selenium, vitamin c & d) omega 3, green tea extract (EGCG), alpha Lipoic acid, n’acetylcysteine and probiotics and enzymes. I’m making sure to eat seaweed every day as well for the iodine. I did try the gluten elimination test, after three weeks I ate two Christmas cookies and the fall out was quite intense. I’m not demonizing gluten, I wish I could still eat it but even if it’s not the cause of my autoimmune reaction I’ve proven that I’m intolerant.

Time will tell, as with all things. Either my symptoms will continue to improve or they won’t and I will be back to square one. I hope everybody here finds something that helps them in some way, no matter what it is. Life is pretty bleak when you feel like garbage everyday.

Most people who are into natural cures find out thru experience that conventional medicine is a threat to their health in general. They cure things that conventional medicine claims can’t be cured. The cost of medical care plummets with naturopath medicine also.

There is all sorts of data proving that the flu shot or any vaccine is a health danger and worthless. Do your research.

Nursing groups have always fought mandatory vaccines. Most of the medical community have no problems giving people people vaccines as long as it is not them. It should be remembered that 10% of the doctors in Nazi Germany joined the SS and that doesn’t include the others who never joined but supported the Nazis. Sociopaths are more numerous in the population than that 4% figure they tout. Most doctors don’t give a sh– about your health. When they surveyed doctors who gave chemotherapy, most wouldn’t get chemotherapy themselves if they got cancer.

As far as drinking 8 cups of water, a way to see if your body needs water is to look at your urine. Let that guide you. If it is dark then you need more water.

Raw milk is the best milk if you have access to it since it doesn’t have the enzymes destroyed. I have a Berkey filter that removes most of the fluoride in water I drink. Borax protocol can remove fluoride in ones body.

If you are over 40 and want to keep your arteries clean and be free of heart disease, you can take nattokinase (prevents heart attacks and strokes).

GMO’s are going to create a lot of health problems. My nephew is Amish and they found all sorts of problems in their second generation livestock with it so they are replacing it with non GMO. The ballot questions in california and washington regarding GMO labeling were rigged. They know if it is labeled people will less likely buy it. There will be non GMO alternatives since the foot soldiers of the powers that be also have families and they don’t want to be sick either.

When my CFS was still fairly bad I saw a chiropractor who totally took me off wheat. I didn’t notice much improvement in the CFS but my irritable bowel improved massively. I do however think that it’s much better to cut it down or out altogether, I do.

I then noticed I craved sweet things badly. My chiropractor told me to take chromium piccolinate. I was amazed how the cravings instantly stopped and I still sometimes take it if I get cravings.

Is CFS curable or incurable? Surely many do get fully better? I would say I am 95% recovered and can now go to the gym 3 times a week.

The only ones I know who get cured or mostly cured are the ones who did not have the disease in the first place.

Have yourself tested for the ciguatoxin to figure out if you really have the disease so you don’t go down a rat hole. 100% of the people who are strictly diagnosed within CFS criteria have the ciguatoxin.

IBS can be resolved with Aloe Muciliginous Polysaccharide capsules. AMP is the highly concentrated active ingredient of aloe vera. It also kicks ass on Diverticulitis.

(the juice of the aloe plant is not recommended for those of us with IBS because it can be too harsh for our sensitive digestive system and can have a laxative effect! That is where AMP for IBS can help. )

Some rudimentary online research shows that the ciguatoxin CFS link is as yet unproven, however if you can direct me to ‘proof’ then please do as I am interested.

If it was proven to be true then this would be quite depressing, so let’s be 100% sure before telling CFS sufferers that they are doomed forever.

I have seen vaccinations blamed for just about everything and I simply don’t buy it without proof. I myself studied the paper that was used to prove that MMR caused autism as part of my masters degree and can confirm that it is fraudulent and bad science.

What we can say for sure with CFS is that there is still much unknown about it, but that many sufferers improve greatly if not totally, and some don’t.

I would like to see the research that shows that only people who don’t get better truly have CFS.

I also believe that the mind has a lot to do with it and as some here attest to the CFS was showing them that they needed to change something in their lives that was dragging them down. In my own case I improved greatly when I broke out of always trying to figure it out and what caused what. I saw that I was victimising myself more than the CFS was.

By luck my local hospital had a CFS treatment unit and they reassured me that I could make big improvements and I did. They saw many CFS patients on a daily basis and knew from first hand that many can be helped significantly.

I think that as more is known about this debilitating disease and as more share what worked for them we will continue to see vast improvements in the treatment of CFS.

The worlds top expert in ciguatoxin has studied the neurotoxin in people with ME/CFIDS/CFS.

People use the same tests to determine whether they have shellfish poison. The test has been medically accepted all around the world but somehow you think this test is not proof for the case of CFS.

Sweeping his research and findings under the rug is like putting on blinders.

The powers that be will not allow the test to be accepted because that would impede their objective of making the disease a psychological one and making it more difficult for people to go on disability.

Currently one has to prove the vague symptom of fatigue to get on disability. This was done by design and with malice intent. This puts all those sick people under severe stress. The vast majority never get approved for CFS, The 400K+ people who have Gulf War Syndrome get disability under CFS but they have special exemption. With such a test, it would make things more cut and dry for disability and more stress free and faster approval.

Circumstantial evidence overwhelmingly implicates vaccines. You claim you studied a paper on autism. Studying just a paper is pathetic research. One needs to study vaccines, lies and cover up on a vast scale.

The government has a vast disinformation program on CFS like they do on other chronic diseases. Most chronically ill people are oblivious to this. They even have fake posters put out disinformation.

Behind the veil of state secrecy, all the unknowns of CFS can be found. Sadly most chronically ill people wear their blinders so the powers that be will win when all is said and done.

But did Dr. Hokama actually claim that all the CFIDS/ME patients in his study (as well as the cancer and other patients) actually had ciguatoxin in the blood stream? No, again. The title of his presentation at the International Symposium on Toxins and Natural Products in Okinawa, Japan makes that clear. His talk was, “Acute phase lipids in sera of various diseases: chronic fatigue syndrome, ciguatera, hepatitis, and various cancer with antigenic epitope resembling ciguatoxin as determined with Mab-CTX.” The key words are “acute phase lipids” and “antigenic epitope resembling ciguatoxin.” Apparently Dr. Hokama developed the Membrane Immunobead Assay test for patient sera, using a specific monoclonal antibody for ciguatera toxin (Mab-CTX).

From the abstract of his talk, it is clear that what Dr. Hokama found was that his antibody bound to a lipid substance or substances in the blood. Antibodies cross-react and can bind to multiple substances.

Anyone with allergies has unfortunately often discovered that fact. So the substance or substances (they might differ in different people) to which the antibody bound might not be ciguatoxin. In fact it is highly likely that the substance wasn’t ciguatoxin. He suggests it is some type of lipid released by the liver.

So what was it and what is the significance of the findings? Both are unknown at this time. Certainly Dr. Hokama’s research is very interesting. Are the substances the antibody bound to in sera the same in each subject? Are the lipid substance or substances bound also toxins or containing toxins? I hope he does more specific research to find out. Ciguatoxin has anticholinesterase activity. So it interferes with the breakdown of acetylcholine. Perhaps the mystery substances bound by the antibody do as well, which would explain some symptoms in some CFIDS/ME patients.

So should CFIDS/ME patients rush out and get Dr. Hokama’s testing for ciguatoxin that the National CFIDS Foundation has advertised? No, since no useful purpose would be served. Even if the test was precisely specific only for ciguatoxin, no treatment for ciguatera poisoning is known. Further, it is quite clear that this antibody test is definitely not specific for ciguatoxin. We don’t know what the other substances are that the antibody binds to, nor if they are even toxins. So save your money and wait for further research. I wish I could say that Dr. Hokama’s findings are a major breakthrough in understanding CFIDS/ME, cancer, hepatitis and cardiovascular disease, but at this stage they clearly aren’t. But they are interesting. I hope Dr. Hokama looks more closely at the chemical structures to which his antibody will bind and researches the significance of these lipid substances he’s already found with that property.

I have read the same things but their action contradict their findings

First the same test they use to test people for ciguatera shellfish poison is used.

Second, people with shellfish poisoning exhibit most of the same symptoms as people with CFS. What a sheer coincidence.

Third, nobody is saying that the shellfish ciguatoxin test is now invalid.

Fourth, molecularly, the shellfish ciguatera toxin is indistinguishable from the one found in CFS except isotope wise.

Fifth, it is claimed that the molecule produced in the liver and a lipid disease so how does the body produce a molecular similar poison in such high quantities. I could understand trace amounts but not very high amounts. It would require a microbe.

Sixth it is not surprising that Hokama is claiming “lipid disease” since someone of his statue would likely be hooked into the government covert operations. Virtually every scientist in the world gets most or all their funding directly or indirectly from the government. Black operations is the key word here.

Seventh, Duchene is no where to be heard or seen when the CFS people get thrown under the bus by the NIH and CDC. Duchene wants to focus on the vague symptom of fatigue. Can she prove she doesn’t work covertly for the intelligence agencies. There is nothing in her background that says she can be trusted, Duchene’s was Vice President and Co-Chair of the Website Committee Massachusetts CFIDS/ME & FM Association in 1990 but that organization’s credibility bit the dust a long time ago.

Black operations is part of the saga on CFS. Most of the CFS research area is controlled by government covertly hence massive amount of disinformation over the last 60 years.

I don’t entirely trust the CFIDS foundation but they have funded at least some relevant research while every other me/cfids organizations have funded dead end research by design. They have been silent about vaccines and their latest path implicating radiation reminds me of the gulf war illness cover up of the anthrax vaccines where the disinfo people pushed the depleted uranium. They never explained how soldiers who never left the US came down with the disease also. In that disaster, over 500,000 troops got hit by the disease. radiation has distinct symptoms – like your teeth fall out.

Lucy DeChene is a mathematics professor who wrote this for the now defunct Mass. CFIDS Update. This was written to purposely try to discredit me, personally, just as the group, after I resigned when they wouldn’t honor a board’s unanimous vote, tried many quite vile things to shut us down.

Is it believable that the typical CFIDS patient actually has ciguatera poisoning?

This was never said. What he stated and published in a peer-reviewed medical journal was that patients tested positive to the ciguatera epitope. Actually, there had already been two studies published that showed ciguatera, itself, was the triggering event for ME/CFS but that is not what was found in this work. One article that said this is available on our website.

Well, no. There may be some misidentified CFIDS cases that are ciguatera cases

in Hawaii, Australia, Florida and other places where ocean fish such as barracuda that are found off coral reefs are eaten regularly, but such fish are not in a typical personâ€™s diet. The only way one can get ciguatera poisoning is by ingesting the toxin, and the toxin is only occasionally found in such fish, which are the top of the food chain. There is no other source. The typical human being will never be exposed to ciguatoxin.

You are not ” exposed ” to ciguatera. The toxin, which is a ciguatera epitope, is being manufactured in the body by a disease (and not a ” syndrome ” ) mechanism. This is hardly a new concept. MS has a disease process that manufactures an epitope to saxitoxin (published in the late 90’s). However, no further work was ever funded to find out why this was found in MS.

But did Dr. Hokama actually claim that all the CFIDS patients in his study (as well as the cancer and other patients) actually had ciguatoxin in the blood stream? No, again. The title of his presentation at the International Symposium on Toxins and Natural Products in Okinawa, Japan makes that clear. His talk was, â€œAcute phase lipids in sera of various diseases: chronic fatigue syndrome, ciguatera, hepatitis, and various cancer with antigenic epitope resembling ciguatoxin as determined with Mab-CTX. ” The key words are â€œacute phase lipidsâ€ and â€œantigenic epitope resembling ciguatoxin.â€

More proof that Lucy should stick to long division! The blood specimens had to be taken apart molecule by molecule to find the minute differences. The researchers around the world understood this paper when it was published and have all asked the same question: ” How could something occur which is so close to nature? ” The CDC granted an international blood permit to Dr. Hokama and the University has tested patients from around the world. Intestingly, the ones who first demanded to be tested were physicians who, themselves, had ME/CFS!

Apparently Dr. Hokama developed the Membrane Immunobead Assay test for

Now this sentence shows you how really ridiculous this all is. Dr. Hokama helped to develope the FDA approved test for ciguatera. He went on to develop more sophistocated states for ciguatera. He is the government’s expert consultant for the NIH, CDC, and FDA for ciguatera. He is one of a handful worldwide who is a top expert in this area. When you develop a monoclonal antibody assay, you can’t get much more specific. NO healthy controls have ever tested positive. For that matter, we know of no primary FMS patients who have tested positive yet we know of not one ME/CFS patient who has not been positive! And not just positive, but so highly positive that Dr. Hokama had to develop a new classification for the higher scores which he dubbed the ” CFS profile. ” And, yes, the researchers at the pathology department of the Al Burns School of Medicine are already hard at work developing a test for actual ciguatera that will not show positive to CFS.

>From the abstract of his talk, it is clear that what Dr. Hokama found was that his

antibody bound to a lipid substance or substances in the blood. Antibodies cross-react and can bind to multiple substances. Anyone with allergies has unfortunately often discovered that fact. So the substance or substances (they might differ in different people) to which the antibody bound might not be ciguatoxin. In fact it is highly likely that the substance wasnâ€™t ciguatoxin. He suggests it is some type of lipid released by the liver.

So what was it and what is the significance of the findings? Both are unknown at this time.

Yes. That’s what happens with every discovery. And that’s exactly why we funded him not once more, but twice more to date. The results of his second phase of research has already been submitted to a medical journal and his is writing on the third phase. Both have discovered much more that will help to explain so much about this illness as well as what direction we must go in to understand how to stop this entire process. And that is exactly why doctors who claim they can ” treat ” this neurotoxin are just using patients and do not really know what they are talking about. We are talking about something so close to ciguatoxin and we know that you can bury somebody with that toxin in their body, dig up the body in 100 years, and still see the toxin but we can’t spend our limited energy answering patients who want so much to believe a real treatment is just around the corner. We’d rather find the real treatment based on science and, when we do, it will work on everybody who really has ME/CFS. Perhaps then even those who ridicule us for their own personal reasons will want the treatment as much as I do!

Certainly Dr. Hokamaâ€™s research is very interesting. Are the substances the

antibody bound to in sera the same in each subject? Are the lipid substance or substances bound also toxins or containing toxins? I hope he does more specific research to find out. Ciguatoxin has anticholinesterase activity. So it interferes with the breakdown of acetylcholine. Perhaps the mystery substances bound by the antibody do as well, which would explain some symptoms in some CFIDS patients.

This work will not just explain what happens in some areas (this is NOT the entire answer to the cause, but just one part and we’ve already funded research into phase 2 of the cause which will be announced in the fall Forum but not online since there has been so much misunderstanding and it’s eaten up much time answering the same questions that were answered in other articles that were not online.

So should CFIDS patients rush out and get Dr. Hokamaâ€™s testing for ciguatoxin that the National CFIDS Foundation has advertised?

We have NEVER advertised any test at any time. We don’t even accept any advertisements, unlike Lucy’s own newsletter that has now shut down. We refuse to because we do not want to create any conflict of interest. However, it is the ONLY test to date that has come out with what a laboratory considers 100% positive. We were sure that there were some patients that had been misdiagnosed. We don’t feel that way anymore!

No, since no useful purpose would be served.

Well, there have been many who have used their test results when their disability has been reviewed. Some have used it for disability applications. The test is not one that can be refuted even though one mathematics professor may think so and the person who posted this old article to a group used to be a volunteer for our group but now spends his time, like Lucy, trying to find fault with our national group. He resigned when we did not fund research that he felt was important but we have a medical director and well as a committee that decides this and voluntary webmasters do not have input into this process. However, we are still grateful for the work Drew did in the past for The National CFIDS Foundation.

Even if the test was precisely

specific only for ciguatoxin, no treatment for ciguatera poisoning is known. Further, it is quite clear that this antibody test is definitely not specific for ciguatoxin. We donâ€™t know what the other substances are that the antibody binds to, nor if they are even toxins. So save your money and wait for further research. I wish I could say that Dr. Hokamaâ€™s findings are a major breakthrough in understanding CFIDS, cancer, hepatitis and cardiovascular disease, but at this stage they clearly arenâ€™t.

The levels found for cancer and hepatitis were far, far lower and have nothing in common with the test results for ME/CFS. Finding what the toxin involved binds to will NOT resolve the problem if it is being manufactured within the body. Instead, this must be attacked at the initial stage but that does not preclude finding out the harm this is doing and finding a real (not a hypothetical) marker as well.

But they are interesting. I hope Dr. Hokama looks more closely at the chemical

structures to which his antibody will bind and researches the significance of these lipid substances heâ€™s already found with that property.

With the help of donations from patients, the ME/CFS community can expect to find out much more about this work in the very near future. We have also been helped by some other groups with funding our work including one from Australia and, as we pointed out in our newsletter, we are grateful. This work, as our newsletter has stated, was begun by pleading and trying to convince, etc. since it was work we uncovered that was not published nor made available in any way. The fall newsletter will reveal much more that has already been discovered but, like the ciguatera epitope, was not published in any medical journals. We are particularly frustrated and angry as we just lost a board member and, should all the work that has already been discovered been shared with the rest of the world, this death may have been totally unnecessary. (Marilyn , a long-term support group leader, advocate, fundraiser, who put together one of the first conferences on ME/CFS died in August.)

1. â€œNeurotoxin Discovered in Chronic Fatigue Syndrome,â€ National CFIDS Foundation, published on CO-CURE, November 17, 2002.

It may be of interest to patients that the medical journal selected to publish Dr. Hokama’s initial paper on this, The Journal of Clinical Laboratory Analysis, is for researchers. Only papers where the entire process is carefully spelled out and can be replicated around the world are accepted for publication in this journal. The second medical journal that will publish on these findings asked Dr. Hokama to submit, The Journal of Toxicology (not yet out) and it may be the first time in history that a medical journal has requested a paper on ME/CFS!

The MMR link to Autism has now been proven to be correct by further studies, and Dr. Wakefield who was demonised for his research has been vindicated… Just FYI. Vaccines contain potent neurotoxic preservatives and adjuvants, I personally know many people who have have acute and also chronic problems directly linked to their receiving vaccines.

Dr Wakefiled’s research paper is now routinely used in University’s for students to come to their own conclusions as to whether it was good research and of course it never stands up well. It is a thoroughly investigated and totally discredited study, i checked it out myself. Please cite this new research. Personally I find the anti vaccine stance misleading and outright dangerous. It’s like the conspiracy theory that says that hiv doesn’t cause aids- it leads to death and unnecessary suffering and anyone who glibly perpetuates the myth better have some hard evidence. It’s playing with peoples lives and that’s just not nice.

Hello, I just wanted to comment and share what is currently working for me. Over the past couple of years I kept feeling worse and worse. Being an RN, I automatically chalked it up to shift work, a crazy schedule and very poor diet. I had no energy and wanted to sleep all the time. My muscles and joints always ached, I would take naproxen twice a day and prescription pain medication with no relief. Some days it was a struggle just to get out of my pajamas. Slowly the depression and anxiety slipped in. The insomnia crept in this fall. In October and November I had become a mess. I was sleeping maybe 2-3 hours a night, if at all. There were many nights I would stare at the ceiling and want to cry when my alarm clock went off. I had horrible brain fog and my bowels ceased moving for three weeks, despite taking multiple laxatives a day. So I finally went to my doctor (yeah, yeah… Nurses are pig headed and stubborn) because I was to the point that I was so miserable I just couldn’t go on. Turns out my thyroid is extremely hyperactive. Explained a lot but I wasn’t satisfied the the lack of theory on what caused it. While waiting for an appointment with an endocrinologist (long wait here due to the number of diabetics) I started researching and came acros Functional MD Susan Blum. She makes the bold statement that all autoimmune disease is activated by Leaky Gut Syndrome exacerbated by gluten. The working theory is that this triggers chronic inflammation throughout the body with resulting Autoimmune Disease. I started researching gluten, I never dreamed I could be intolerant. What I found really shocked me, all the signs and symptoms of gluten intolerance were things I had suffered with for years and never related them. I had acne, insomnia, chronic constipation, depression, anxiety, muscle and joint soreness, absolute fatigue, ADHD, brain fog, nasty stomach pain whenever I ate… I felt so awful at that point that I was willing to do or try anything to feel better. Even if it meant giving up donuts and cupcakes because I adore sweets. Yes, the diet was a huge change, it was confusing and hard to grocery shop at first. I am a huge skeptic, I keep a daily log of foods I consume, supplements, how much I slept along with everything else going on in my life. In one month I was sleeping at least 6 hours a night, my depression and anxiety were much more manageable, I could concentrate better, my bowels regulated, my skin changed from pasty pale with gray tones to actual very light beige with a slight glow. I no longer constantly ache. When starting this I stopped all my medication, I informed my doctor of my plans and she grudgingly gave her blessing. I wasn’t on anything crucial – Cymbalta, naproxen, trazadone for sleep, and flexeril… I had stopped the narcotic months before because it didn’t help anyway. This is the first time in years that I don’t wake up stiff and sore and come home from work barely able to move. I physically feel like I’m in my early 20s again. I lost 30 lbs, most of it belly fat I have struggled with for 10 years, granted I can argue this is fallout from the hyperthyroid but I also am getting back muscle tone. I feel better so I move more. Chronic Fatigue Syndrome along with rheumatoid arthritis, lupus, fibromyalgia, thyroid dysfunction and Addison’s are just a few of the disorders Blum believes are caused by gluten and toxins. I have no idea if this will apply to anybody else, Blum has thousands of testimonials on her website, but I can only speak for me. Months later I’m still waiting to get in with the endocrinologist, I’m still going to follow up but all my symptoms are drastically reduced if not gone. I am absolutely amazed, I never realized how truly awful I felt until I started feeling decent again. The way I looked at it, it wouldn’t hurt anything to try it. It was certainly less invasive than the standard treatment of beta blockers and/or shutting down my thyroid with medication, radiation or surgical removal. I had nothing to lose, except for cakes, candy and sweets. The funny thing is I craved sugar all the time. Now a bar of chocolate will last a week or more. Being from the medical community, I am aware of the placebo effect and I am still skeptical, don’t get me wrong. I can only speak for me that this made a huge difference in my quality of life.

Nursing groups have long opposed mandatory vaccinations for it’s members because they know what causes CFS and other chronic diseases. They have been hit hard by CFS as a group. Last nurse I talked to when I asked if they will submit to any mandatory vaccine was – hell no.

As far as Rheumatoid Arthritis, this is caused by a microbe. Seventy percent of the RA in the world can be cured with the borax protocol. I have personal experience with this and I didn’t quit gluten.

You likely didn’t have Chronic Fatigue Syndrome. CFS is virtually incurable. You had CF – Chronic Fatique. Let me ask you – How do you remove the ciguatoxin from the system. It sticks to the nervous system and brain cells. This is one of the core issue with the disease besides the infection.

How can gluten create very high levels of ciguatoxin in ones system. Read my post above about ciguatoxin.

“Dr. Susan Blum does not get a flu shot for herself and she does not recommend them to all of her patients. She explained that she recommends the vaccine to patients with chronic illness who are at higher risk for complications and for her patients over the age of 65. She does not recommend the flu shot for her younger patients who are healthy individuals, though. She went on to say that there are really great ways to strengthen your immune system and that is the best way to prevent getting sick.”

The fact that Blum recommends them to her chronically ill patients is alarming so she can’t be trusted. The evidence against vaccines is overwhelming. Even vaccine scientist Hilleman who was responsible for most of the vaccines in the world warned people before he died that it was behind the explosion of cancer also.

Let me restate something You likely didn’t have Chronic Fatigue Syndrome. CFS is virtually incurable. You initially had what comes under an umbrella term CF – Chronic Fatique when cause is unknown.

Autoimmune diseases have underlying infections that need to be addressed. You may want to look into lugol’s iodine and selenium for over active hyperthyroid. There is contradictory advice about hyperthryroid. One view is that hypothyroid and hyperthyroid are both caused by lack on the iodines. removing Gluten from diet may be working for you but you may want to look at other angles that may allow you to eat gluten.

Prioris, I also believe that injections cause a lot of problems, I don’t know if I would go as far as what you say about all of it. What Sulenna was saying does make sense. So maybe she didn’t have CFS and it was all caused by her thyroid and gluten. That’s why she said it helped HER and asked that people give it a try. I also have a gluten sensitivity. What she is saying is true. Staying away from gluten has helped me with depression, pain, fatigue and anxiety. My symptoms are not completely gone, it has made a difference. I suffer from FM and CF and almost died from systemic candidiasis. Gluten causes a lot of problems for people that don’t know they have a sensitivity. Even doctor Oz had it on his show about a month ago. What people should do is try getting off gluten for 3 weeks, and if they don’t notice a difference in how they feel then they don’t have a sensitivity. There are people that have suffered from migraines for years and have done everything under the sun to get rid of them. Some try the gluten free thing and voila! No more migraines! Gluten causes inflammation (along with other things of course) and we know when there’s inflammation in the body it causes heart disease, cancer, diabetes, alzheimers just to name a few. People, it is worth trying to see if you’re gluten intolerant or sensitive!

I agree that one needs to experiment with things. This will allow a process of elimination to figure out how to get healthy and narrow down the possibilities.

I am of the mind set that one figure out something to neutralize the gluten problem instead of just stop eating gluten. For instance, some people just stop eating dairy because it causes their RA symptoms to aggravate. I found that taking CLA with dairy neutralizes this problem.

I think FMS has multiple groups within it so one solution does not fit all. I think the diagnosis method is very crude and subjective.

I do think that most Fibromyalgia people have underlying infections causing it. Some decades back I experiment with a few antibiotics that I could stand and minocin (not minocycline) made my FMS start evaporating in a few days.

I too have had improvement after getting off gluten, but also stopped sugar, milk, alcohol and most other carbs. No more than 15g carbs per meal (Schwartzbien Diet). I thought it would be hard, but now I can’t imagine ingesting any of that other stuff that I used to find so comforting.

I remember that study when it was happening. At the time the CDC and NIH were carrying out a cover up of the CFS.

The motive behind that HPA axis study was to prove that people with CFS had a psychological illness and cover up the real cause. The name CFS was created to trivialize and bring ridicule to the disease.

Depressed people they tested in past studies have historically had high cortisol levels. When CFS people were tested, they had low cortisol levels. So they concluded that even though the levels were low, that CFS people were just depressed.

The HPA axis studies were just another covert attack on people with CFS/CFIDS/ME.

BTW: Walter Gunn use to work at the CDC and was involved in the CFS are so when he retired, he said he would testify against the CDC in any future criminal prosecutions. Of course, the prosecutions never occurred. Congress covered it up.

I sometimes think that the current epidemic of attributing every problem ever encountered by anyone as being the fault of ‘them’ ‘the government’ ‘cover up and conspiracy’ as being quite a serious and disempowering disease in itself. Probably caused by vaccinations.

This is a very appalling article on Chronic Fatigue Syndrome. Another disinformation piece.

Question: How should one get diagnosed with Chronic Fatigue Syndrome?

There are a couple ways one can go about getting a diagnosis.

Go to a ME/CFIDS/CFS doctor. These doctors do exclusionary testing. It can cost 5K or more to do testing. There are also travel costs. There are relatively very few doctors who know anything about the disease.

Given the dire economic straits many sufferers are in and the difficulty of finding doctors, The least expensive and accessible method is the way to go. Focus on getting a few tests done by some doctor.

Balance test is the first test can be done by yourself. There are three things that help you balance. Two things in your brain and your eye sight. During the late 1980s, a women doctor who worked at the massachusetts eye and ear infirmary medical came down with the disease. She subsequently tested 300 patience who had been diagnosed with strict CFS diagnosis protocol. All 300 patients had both balance systems in the brain knocked out so the eyes were the main thing that helped them balance.

To do the test, walk on a straight line with your eyes open. You should be able to make that. Close your eyes and try to walk that straight line again. You can have another person close by or even a wall to catch you if you fall. It should be more difficult or impossible to walk that line with eyes closed.

Get a ciguatoxin test. This is as close to a definitive confirmation of CFS as one can get. There is a place in Hawaii. It costs $100. It can only be ordered through a doctor so just find a kind doctor who will do it even though they may not know anything about the disease. Maybe you can maybe fill most of the forms out for him to make it easier. They just take your blood and send it out to Hawaii.

People with CFS will have 10X to 100X the level of ciguatoxin than people with shellfish poisoning. It is also a different epitope than the shellfish variety. All the people strictly diagnosed with the disease had high levels of this ciguatera toxin in their blood and tested positive.

If you want more confirmation, you can have a test that measures your Natural Killer cells tested. A doctor can send samples to Klimas Laboratory in Miami. Anything 20 or above is considered normal. Your average healthy person is around 40. Mine for instance were measured at 4. WHen NK cell activity reaches zero, the immune system collapses. Not all CFS people measure low but most do.

Many people with the disease are unaware of the ciguatoxin test.

You can get more testing done on your immune system and other things but it costs more money.

Please note that the long term hallmark of this disease is the neuro cognitive symptoms and not fatique. Fatigue is manifested in a wide range of medical problems so is nebulous. CFS is a systemic disease and can have hundreds of other symptoms. Many doctors who don’t know anything about the disease will diagnose people with the disease who don’t have it. You’d rather NOT be diagnosed with this disease. Even if you get a diagnosis, you are on your own as far as treating it.

FYI: I have had CFS for 55 years. I was one of the rare few who got disease at age 5 or younger.”

Origin of ME/CFIDS/CFS and INFECTIVITY?

Vaccinations.

There will be no definitive or official announcement that vaccinations caused the disease.

Why?

Because there are very powerful forces who want to suppress such information because it exposes an ugly underbelly and would compromise the powers that be larger agendas and operations.

The origin of the disease can be derived at indirectly

First, we know one marker of the disease is the high levels of ciguatoxin, The potent neurotoxin us not natural to the body so how did it get there. It is clear it didn’t get their by ingestion. This leaves only a microbe as the culprit. What exactly that microbe is can only be guessed from an outsiders perspective. This also preclude there being multiple causes.

Second, a massive explosion of the disease occurred especially between 1960 and 1990.

Third, many outbreaks have been correlated with time of vaccinations. The Polio vaccines were implicated a long time ago.

Fourth, US, Canada, UK and Australia have spearheaded an international cover up spanning over 60 years. There is a long history of disinformation and lies from the governments. They allowed the sickened to drift in the wind.

Fifth, in my survey of patient organizations, I have found virtually all of them are tainted by covert military intelligence operations. They have stood silent about the vaccinations and helped create new generation of victims by not warning mothers about the danger of vaccinations. There has been overwhelming evidence of their damage as they relate to chronic diseases, cancer and autism. Not even GWS moved them when the anthrax vaccine was implicated. The patient organizations are there to keep the origins of the disease secret. There are also fake patients who spread disinformation thru websites and posts.

Sixth, most of the leading doctors on the disease have also been silent about the dangers of vaccinations. I have long concluded that they also are part of a military intelligence operation. The carry out multiple functions such as biological monitors, disinformation, speaking or participate or embrace fake research.

The one common thread across all these organizations and people is their support or neutral stance in regards to vaccines and silence about the devastation that vaccines are doing. To them, it is still a mystery on where the disease came from.

Vaccines have long been part of a depopulation program. The medical charity groups are part of that program to protect the vaccines. Add in all the other powerful institutions and doctors who support the lie and you will have no definitive origin for the disease.

Is ME/CFIDS/CFS infectious?

No. Simply because the origin is from one or more vaccines. If someone got vaccinated then they are already at risk. Until it becomes proven that non vaccinated people can acquire this disease, there is no evidence that it can be acquired.

For people with ME/CFIDS/CFS, infectivity is a major concern especially if they are dating or want to get married. They can tell whoever their dating that their health was damaged by vaccines and that one is only at risk if they got vaccinated. Of course, finding a day where they are well enough to get out of the home to date is a bigger obstacle and those are rare.

If one surveys a large number of people who think they have the disease, there will be a large number of causes hypothesized. For most, they have little idea that a vast disinformation campaign has been waged against them. They also have been effected by that campaign.

PRIORIS, Are you being paid by Quackwatch or by those who do ciguatoxin test? There is no need for your righteous tone. People can figure things out themselves. Share what worked for you and let them decide which path to choose.

The financial advantage of the ciguatoxin test is that it cost around $100. The alternative is paying over $5000 for a large battery of exclusive testing.

People with CFIDS have been put into devastating poverty because of the disease. They need as many financial short cuts as possible.

Quack watch is just a front for the powers that be and anti-natural cure. Anyone who reads my posts over time will know that your statement is silly. Quack watch is good to research alternative cures – basically whatever they diss, it provides a path to research. they provide links and everything. Use it to your advantage.

great info although I wouldn’t say this is new. I’m glad it is getting more main stream. It took me about 2 years to finally get my adrenal fatigue straightened out – no thanks to western medicine. The GI – detox – hormone systems are all interrelated so many of those with GI issues also have hormone issues and vice versa. Cleansing was also very helpful to me, in addition to all the supplements, bio-identical hormones, and stress/toxicity reduction.

Hello,there is a program by Ashok Gupta”Amygdala retraining” guptaprogramme.com ,which is specifically designed for CFS , (or ME in UK). He had it for 4 years himself. I purchased the program and attended 10 live 1hr long online sessions. Nobody ever explains CFS better than Ashok.. And it works 100% if you follow the instructions to the tee.

Due to your initial comment about the Gupta program, I looked into it and signed up for the 3 free hours of the program on Youtube. It’s awesome and it makes so much sense. Now I’m even more convinced that this is the key to reversing CFS and other chronic health issues. I’ve tried all the nutritional/supplement/right diet stuff for the past 7 years, and it’s helped a little bit, but not that much.

You said you did the live course and purchased the DVDs? I’ve read great things about the DVDs and was wondering if they are as effective as the live course. Also, have you heard of Annie Hopper’s Dynamic Neural Retraining System? It looks a bit similar but maybe more geared towards multiple chemical sensitivity.

I am glad I could help. I have not heard of Annie. I purchased the course, and ALSO participated in live webinar (12 sessions) . When I first was listening to Ashok, I cried, because nobody ever understood what one has to go through with CFS, as Ashok did. I don’t think that $300 or so is such a high price to get back to a normal life. One also have to remember, the program is not an easy fix, it requires discipline for the entire 6 months.

i don’t know if you’ve subscribed to the comments for this post, but if you have, i’m wondering if i could somehow get in touch with you to ask you some questions about the gupta program, because it’s one the options i’m thinking about. thanks.

I would define my CFS as post viral. I had glandular fever as a teenager which hospitalised me and then can trace various symptoms that appeared post the flu on a number of occasions.

One day after a gym workout I was totally exhausted and drained for days. Sleep then started to become unrestful and I had a lot of pressure build up in my head.

CBT was very helpful particularly the behavioural aspect(filling out time sheets etc) this helped to break the minds obsessive fixation with the cause and effect of CFS and symptoms.

It diminished over time but never fully left. One interesting effect is how in my case exertion could trigger fatigue. For example simply the action of the exertion of using a screwdriver with some pressure for a short time could trigger, after a short time delay, a massive dizzying and wiped out fatigue that could then last many hours.

Sometimes it seemed as if it was purely psychological but at other times it would feel very physiological and due to some hormone depletion or the like. The adrenal information presented here is interesting.

I also tried supplements such as 5htp and modafinil as many reported benefits from their use. I actually found them to be totally intolerable and they would cause me to be in an unbearable state of mind intensity.

You are absolutely right about the origin of CFS. Please listen to Ashok Gupta on guptaprogramme.com. He had it himself for 4 years and now treating people with CFS in UK and all over the world. Good luck.

This is his explanation of CFS. He ignores the finding of very high levels of ciguatoxin. I doubt he tests his patients for it either. He is essentially helping non CFS people.

“The Amygdala is the part of our brain that is responsible for the “fight or flight” response, or the stress response. It is also known as the response of the sympathetic nervous system to threats. From our published research which you can view here, it seems that this part of the brain gets stuck in a chronic state of hyper-arousal, quickly using up all the body’s store of energy. It also causes lots of secondary issues which contribute to a whole host of symptoms in the body such as brain fog, difficulty concentrating, muscle pain, and exhaustion”

I really doubt that Gareth had CFS either. I know people who are post viral type and they are still not cured after over 30 years.

“Simone Wesley discovered that by combining cognitive behavioural therapy and light exercise a third of patients make a full recovery.”

Simone was the information gatekeeper on CFS. In order to get published in any scientific journal, he had to approve it. He shut down alternative views of the subject in scientific journals. No doubt that Simone is a puppet for the powers that be. There have been some calls by people to have Simone Wesley tried for crimes against humanity.

CBT was used to keep the disease a psychological one and let the people with CFS twist in the wind. Even suggesting CBT treatment for CFS is a disgrace.

Why to trash someone you know nothing about? How can you discredit a program you have not tried? I took his course and 3 mo webinar and a living proof that if you devote entire 6mo to the program you will succeed. Besides you get your money back to the penny if it did not work for you. I have not met anyone nicer than Ashok in his desire to help people. Also, how do you know what is primary and what is secondary? Many other programs work on the same principal- BeSetFreeFast, Vipassana retreat. Change your thoughts and your psychosomatic disorders disappear. Ashok Gupta is guiding you step by step.

I have the disease for 55 years so my knowledge trumps his just on experience alone.

I have lived through all the political history and research on the disease. Unlike most people with the disease, I have paid attention to what takes place on a larger scale. There are all sorts of theories that people have proposed that have had no results.

I’ll bet Gupta never got the ciguatoxin test either so we don’t know if he really had the disease.

People have to take a path to dead ends to accumulate experience and knowledge.

This disease involves a microbe infection. How does Gupta address this.

I disagree with her post too, but it might help some people. In my case, it’s adrenal insufficiency (from trauma/extreme chronic stress), EBV, leaky gut, and who knows what else. I had SIBO, but I think the colonoscopy cleanse (PEG and electrolytes) killed it or at least knocked it down, removed the biofilm maybe. With all that going on, no amount of nutrition alone could have fixed me.

There is a real lack of understanding in the medical and wider community of this disease, and it’s a common misconception that there isn’t any physical evidence of it. There is plenty. Unfortunately these kinds of misconceptions lead to real problems for people with ME/CFS, as we suffer discrimination and mismanaged medical treatment because of it. I’d appreciate it if you’d correct this error in your article.

Great article everything you’ve mentioned is critical for recovery from CFS , I’m trying to recover after 7 years and tested + for 667t a mthfr gene malfunction and need to supplement with activated forms of b12 & folate to support the detox cycle, a big part of recovery…

Thank you very much for the article on CFS. Perhaps THE stymying problem with CFS and a host of neurological difficulties is that because of trauma (instilled once because of accident or repeatedly due to chemical imbalance like heavy-metal poisoning (amalgam fillings)/CFS and/or Friedreichs Ataxia/multiple sclerosis). Neurotransmitter production is shifted to an unbalanced state where only excitatory neurotransmitters are produced and so that lack-of-recovery-rest, cortisol-alteration/tension/anxiety that are ‘normal’ responses to events become fixed/locked. Symptoms remain unchanged because the balance between excitatory and inhibitory neurotransmitters is never restored, even though much needed.

An article in Life Extension magazine on Brainshield http://www.lef.org , points out the critical nature of this natural balance. An accidental assault like a brain injury from a car accident just might shift this balance, so that instead of the accident occurring once, to the brain the event becomes actual … and it is continuously-repeated over and over. Perhaps, we should re-look into this disruptive pattern in neurotransmitter production as a key feature in brain/spinal-cord injuries and brain-assaulting chemical attacks like allergies/CFS/fibromyalgia/… cystic fibrosis/FA/multiple sclerosis.

There is little doubt that such use is experimental, but MAY be worthwhile.

I thought the papers by Maes about LPS translocation found in CFS and depression were an interesting avenue of research for causes of CFS. I’m not diagnosed because I’ve become slightly skittish of doctors, but eating and drinking loads of cranberries and fermented dairy products is very normalizing for me. (Given the success of the cranberries, I do suspect H. pylori at this point). I also benefited from selenium (I have rather obvious hypothyroid symptoms). Anyways, it’s fully possible that people labelled with CFS have different diseases with different causes. So maybe some have Lyme, some have SIBO, some have a mito disorder, etc. Therefore, different treatments will be more or less effective based on whether they address the actual cause of the CFS symptoms. Time management skills, vitamin C, etc. are helpful while trying to deal with the underlying issue, I think.

How the heck does one get diagnosed with CFS? I’ve been struggling with it for years and it has progressed to the point where I have chronic insomnia. My sleep disorder doctor checked my CPAP machine and literally said that the machine is doing its job so you shouldn’t be having these symptoms. I’ve been seeing a naturopath for about 6 months and she administered the salivary adrenal test kit and my cortisol is very low in the morning and then it flatlines between 5pm and 10pm. I’ve taken an MBSR course and joined a local meditation group. Should I see my GP, or will an endocrinologist be able to help?

Your on the right track. Your GP won’t help any really. Stick with your Naturopath. Meditation is great. Get your Naturopath to give you the herbs that you need though to help you. I’ve seen an endocrinoligist and really got nowhere. Good luck!

I had chronic fatigue for 10 years, to the degree that most days I could go to work but do nothing else other than come home and go to bed.

Tests showed EBV, OAT axis problems, vitamin deficiencies, digestive non-absorption, etc. I spent many thousands of dollars on every kind of natural therapy and traditional and alternative healers with never more than temporary relief.

Then a very smart alternative chiropractor who I had gotten to know quite well told me I wasn’t improving because of the stress of my unhappy marriage. He was bang on – within 48 hours of leaving my husband I was completely healthy again, rollerblading and biking many kms each day.

That makes total sense to me. I had chronic asthma until I was 21. The day I moved away from my monster of a mother… within 3 days my asthma was gone never to return unless I went back to see her or if I eat way too much dairy or foods I test allergic to.

I did the raw food diet/vegan diet, TM meditation, you name it up to that point, but leaving the toxic world of my mother was the big kicker for me.

Ironically years later I realized that I was still stuck a lot in how I related to women and my dating life. That was what lead me to do psycho/emotional growth work that resulted in my experiencing directly how how I was raised and the repressed rage I carried being a key to reclaiming my power that no diet/cleanse/supplement could do justice to.

(hint- it’s at the bottom) and most of the experts in the field counsel against it as it destroys muscle and mitochondria without the catabolitic response everone else enjoys.

But as your article is more about the adrenals , I will add that my own take is that by trying to function without some essential, if still undefined, energy means I flip into adrenaline just to do normal regular stuff – like get up -which does burn them out – but it does not seem to be the cause or cure for the cfs, but you have to watch them for sure.

anyway, as you can see by the link above, a lot of treatments have been tried by a lot of different people. it’s complicated by the fact that they may have different underlining conditions!

I agree. At my worst, exercise for any length of time felt very wrong, like whipping a dead horse. Now that I’m at 65%, however, I’m having a hard time getting my stamina and strength back, and it seems like a mighty uphill battle. so tired.

Excellent article on CFS! One of the best I’ve read… easy to understand and well put together.

I discovered I have low adrenal/thyroid function {chronic fatigue} after my last relationship ended. This was the trigger that pushed me into seeking help and getting some tests done.

I’ve had some success with the paleo autoimmune protocol, doing it mostly keto without fruit/carbohydrates and starchy vegetables often works best unless there are other factors like reduced income I’m facing now for the winter. No matter how “on” my diet is, that makes my anxiety and depression loop come on strong which then makes me want caffeine/sweets/alcohol.

I take DHEA, licorice, skullcap, siberian ginseng, maca, ginger, rhodiola, and ginkgo to support the HPA Axis and also Thorne’s Basic Nutrients IV to cover the vitamin/minerals that hair analysis showed to be extremely low, along with extra vitamin D3 and Nature Thyroid to support the thyroid.

In all honesty psycho/emotional growth work unpacking repressed rage helped me more than anything I’ve ever done! Ironically my x-girlfriend had the shadow side of my mother which is why this triggered the relapse on that level. I gave up my energy and lost my center if you will… by going into her world.

My truth is that unless one is working through the root cause for their CFS then supplements and diet only go so far.

I agree with you, but the illness may be as much about chronic stress triggering CFS in the first place as it is about underlying psychological issues sapping your energy. Chicken/egg. Since I have so much time on my hands (now that I can’t do much else), I have spent a lot of time unpacking baggage and untying deep emotional knots. Maybe it’s helped, but sometimes it is good to “get out of your head” and stop thinking too much about past hurts. Give it up to god and let it go, if you can. =)

Different type of Trauma can trigger the damage from the vaccines. I know of a young couple that got hit from behind in an auto accident. They both came down with CFS at same time and became permanently sick. One idea is that trauma can shutdown the immune system for short time allowing a window of opportunity for the infection to take hold.

I have had chronic fatigue for about 4 1/2 years. It has been debilitating at points and I have had a number of ups and downs as I have learned more and more about what the root cause was. I’ve had many symptoms including adrenal exhaustion, sleep issues, leaky gut, hypothyroid, immune disfunction etc. About 2 years ago (after working with some major dr’s) I was tested for mycoplasma pneumonia and tested positive for an active infection. I have since been diagnosed with additional infections from babesia, and EBV. As I get the microbes under control (which involves dissolving the biofilms) I get stronger. Although extreme stress and exposure to mold were the initial triggers for my illness, the key to my health has been about managing the microbes.

Jennifer, as per Lori’s comment above, you might consider exploring whether or not you have been exposed to Lyme. The Babesia you have been diagnosed with is a tick-borne infection and is often transmitted at the same time as Lyme (as well as others like Bartonella). Many Lyme patients have EBV as well as other viral issues (HHV, etc.).

I am very surprised to see Chronic Fatigue Syndrome discussed on Chris Kresser without any mention of Lyme. In case anyone missed this point in the article, no one has definitively found what causes Chronic Fatigue! It is a list of symptoms. And these symptoms could be cause from many different origins. Finding the many different origins is quite possibly the only key to getting well for some.

An original CFS diagnosis is quite prevalent in those who eventually are diagnosed with Lyme. Think Lyme is a rare disease? The CDC recently raised its’ estimates of yearly cases of Lyme disease from 30,000 a year to 300,000 a year! And I would say many of us concur that information from the CDC is lagging behind cutting edge research, so I can only imagine the real numbers of untreated Lyme out there.

I ate 80/20 Paleo for 13 years prior to getting sick, even taught classes on it. After becoming ill, I transitioned to GAPS for 2 years and STILL only became sicker and sicker. Used natural treatments for my thyroid, leaky gut, adrenals, depression, insulin resistance, severe insomnia, fibromyalgia, heart palpitations,arthritis, cognitive dysfunction, saw over 35 practitioners/doctors, including a neurological chiropractor from the Carrick Institute, and while these treatments may have helped me feel slightly better in the short term, overall I was very, very ill. ALL while being told I had Chronic Fatigue Syndrome. Only after losing the ability to work, drive, or leave my house unassisted, one amazing practitioner saw past the Chronic Fatigue label, had me tested for Lyme, and finally I am on the long road back to recovery.

Of course, not every single person with CFS is going to have Lyme, as I stated earlier that CFS can have many different origins and Lyme is only one possible origin. But I can assure you, that the Lyme community is rife with people who lived with the CFS/Fibro diagnosis for years, while their lives literally crumbled around them, and the untreated bacterial infection of Lyme opened the door for many, many other nasty viruses, parasites and other problems to invade their body. The earlier you treat Lyme, the BETTER. And while I am extremely happy to read this post about CFS and its connection to the HPA axis, I strongly believe Lyme deserves a mention. Unfortunately, its too far-reaching and devastating not to.

Lori, SO glad you commented because you took the words right out of my mouth. Folks, please consider Lyme if you have been told you have CFS, particularly if: 1) you live in a tick-endemic area; 2) you are at high risk (you’re an outdoors person; a hiker; a gardener, or spend lots of time outdoors; 3) you’ve ever been bitten by a tick and ESPECIALLY if you’ve had a bulls eye rash (as this is actually diagnostic for Lyme).

If you are going to be evaluated for potential Lyme infection, please see an LLMD (a Lyme-literate medical doctor) since Lyme is not well understood by the conventional medical system and the CDC Western blot you will likely be given has a high rate of false negatives.

I concur. Lyme and other tick-borne infections are far more ubiquitous that we realise.

These infections have to be properly ruled out before anyone should be defined as suffering from CFS. Unfortunately tests for Lyme and other tick-borne infections are extremely unreliable which makes it extremely difficult to definitively rule out (even when one has a negative result – false negatives abound). This is why many people are clinically diagnosed by Lyme Literate doctors.

Microscopy is worth looking into. And it is vital to educate oneself as much as possible about Lyme/tick-borne infections and the reliability of the tests.

On a second note – Histamine intolerance/mast cell disorders can cause or exacerbate symptoms. I would recommend reading about histamine intolerance and trying a low-histamine diet as a trial, anti-histamines (only as a last resort when symptoms are extreme), and investigating whether any medication one is prescribed is histamine-releasing/DAO enzyme blocking (with the guidance of medical practitioner of course).

This is of course a sticking plaster: Histamine intolerance/secondary mast cell disorders may be caused by tick-borne infections which stimulate excessive mast cell degranulation, and antibiotics may contribute by creating gut dysbiosis leading to inflammation in the mucosal lining which could result in increased mast cell degranulation and interference in the production of the Diamine Oxidase (DAO) enzyme which reduces histamine levels.

I suspect many people suffer from histamine intolerance (to one degree or another – from panic attacks and anxiety, to chronic headaches, dizziness, acid reflux, rosacea, acne, eczema, and asthma ) because so many of us have been exposed to antibiotic treatment and have never been able to correct our gut dysbiosis. .

If one looks at CFS, Lyme, Severe MS, Gulf War Syndrome, Lupus, FMS etc, they all have mostly overlapping symptoms. The only different feature between Lyme and CFS that I could find is tendency for Bells Palsy Syndrome. Lyme is difficult to diagnose.

Lyme didn’t exist until around 1960s. Like other diseases, there is a cover up going on. Many doctors got their medical license taken away when they tried to treat Lyme patients with alternative protocols and antibiotics.

Hi. You mention salivary Adrenal testing from Direct labs, but I see that 4 are listed (under Hormones). Which do you recommend? I have a 24 year old son w/ severe depression (+ anxiety, easy to anger, & Incredibly sensitive emotionally: For example, I’m hearing now that he felt “traumatized” that I said he wasn’t allowed to read one particular book out of 4 he had brought home back in middle school because it wasn’t appropriate then: Disclosure by Michael Creighton). He sometimes has severe vomiting episodes lasting 12- 24 hours when he feels a situation is out of his control. The only other oddity is that his hands are Always shaking, with a mild to moderate tremor. Good childhood, no abuse, so I think there is an underlying medical issue here. He mostly eats Paleo (by default, because we do) since moving back home 7 months ago. He has only had one vomiting episode since then, where typically it had been 1 -2 X per month. Any ideas? Also, if we order an adrenal test (which one?) & see he has a problem, where do we go from there? I have only found one Paleo practitioner in our area to take him to (A chiropractor who immediately used “applied kinesiology”- I am Not convinced). I would So appreciate a response, your thoughts. Thank you so much!!

I believe your son probably does have an adrenal problem with all the emotional stress he’s been under but it seems to me that you must first fix why he’s having so many issues. Find that out first, then the adrenal glands. Even if you did the adrenal testing, you probably already know that it will show that his adrenals are out of whack. Did something happen to him as a kid or a young adult that you don’t know about? Has he gone for therapy? It almost seems like he has suppressed something, something he doesn’t want to deal with. See if he’ll try meditation and Tai Chi. It’s great that he’s off the carbs now, but I believe some carbs are good, people with low serotonin levels need some carbs. Is he gluten free? If not, I would give this a try for 3 weeks, just watch the carb intake though with gluten free. People that are gluten intolerant or have a sensitivity can have headaches, depression, fatigue, joint pain, migraines, anger issues and anxiety. He could have many different intolerances to foods or even allergies that could be causing a lot of his symptoms. You can also try a food elimination diet. I’ve had all my testing done with a Naturophatic doctor. He will help him with the diet, (food allergies) the testing for the adrenal glands and any toxins he may have build up in his system. Also check to see if he has a candida issue. You can print out the questionnaire that Dr. William Crook designed and then take it from there. But I suggest that if he has a candida issue not to do the cleanse on his own, he will need supervision if he has a bad candida issue. He will get pretty sick if he does the cleanse on his own. I had systemic candidiasis and was dyeing, my body was shutting down. Candida takes on many different faces and sometimes that’s why you can’t figure out why someone is so sick. Your son definitely needs professional help, I don’t know if you can tackle this just on your own. I wish you and your son the very best and wish him a speedy recovery. Take care.

Lizette, thanks So much for commenting. I think seeing a Naturopath is a great suggestion, since they have med. training & so much more. He has been seeing a wonderful psychologist, which does help.

We have always been very close, so I know that he went through the typical, painful “stuff” most of us go through in middle school, early high school, like feeling that he didn’t fit in. But his internal Reaction to that stress is so much higher than I’ve ever experienced or heard of. He has a very high I.Q. & is very intuitive, like many women are, but his intuition gets derailed by negative assumptions. He told me a couple of years ago that he has been depressed since middle school, & I was stunned, because he hid it completely. He can’t come to grips w/ a break up w/ his girlfriend 2 years ago, & he feels tremendous guilt over the $ we spent to send him to a top tier university. His degree is in a creative field where jobs are hard to find. But, he isn’t even Trying to find anything now; If something falls into his lap, he takes it. Academics were a breeze for him, so I think he’s not used to having to scrabble for anything; (You can’t fail if you don’t try)! So, here we are with a depressed, amazing young man who doesn’t seem to have much if any emotional strength or “survival” ability.

Part of me feels like I need to be the mama bird that forces him out of the nest to get off his ass. Or, see if we can afford to have him go back to college in a field that he can actually get a job in. The problem w/ taking a hard line approach is that he has said if he can’t get his head straight, he doesn’t see himself being Alive 3 years from now. So, I’m torn, living w/ feelings of anger/ disappointment, & helplessness. I have told him that gluten can be associated w/ severe depression, & he reacted strongly, saying going gluten free would be one more loss, especially giving up beer. He Is willing to get tested, finally, so it will be interesting to get the results.

He doesn’t exercise but says he wants to, so we just found a great gym & will get him a personal trainer for a few sessions. (We have a weight set @ home, & he could walk outside, but he just doesn’t do it. When it is warm enough, he will at least lie out in the sun to get vit. D).

Paleo physicians network… doesn’t show any Paleo Naturopaths in our area, but I bet many Naturopaths would be onboard. w/ Paleo.

After so much effort put into parenting, I never thought I would be in this position. I think we tend to be only as happy as our least happy child. Thanks for reading and commenting.

Your very welcome! I’m glad to hear that your on the right track with your son. I believe any Naturopath with do, I don’t think you would need a Paleo Naturopath. At least with a NP you will be able to get him the herbs that he needs. I take a number of things. I like Rhodiola for depression and stress and I take Ortho Adapt made by AOR for my adrenal glands along with a number of other things. Your son could take Vit D drops at this time of year instead of waiting for summer and not taking anything. When you described that he was intuitive and has a high IQ, I did think of that the last time I sent you a comment. You should see if you can find anyone in your area that knows about intuition or mediums. Do you have a metaphysical store around? They might be able to direct you to the right people. A good friend of mine owns one and she knows a lot of people in that area of expertise. I’m very intuitive also but not like your son. He sounds like he needs grounding and needs to meditate and needs to learn how to use and control his gift. There are a lot of kids out there that are born now with these gifts, they’re called Indigo children or Crystal children. Being gluten free is not that bad, at times I find it hard. Yes, he would have to get off the beer! LOL! It has a lot of yeast in it and that concerns me if he has a yeast overgrowth. Please look into his gifts, there is a lot that he can do to help himself. There is plenty for you to look up on the internet also. Good luck! Keep me posted!

Although it’s not quite CFS but I do feel exhausted from time to time. Some days are good and some are bad. From some of the tests I have found that my stress coping mechanisms are not that great.

My question is what are the mind body techniques that can be done regularly? Is it mindful meditation? How can HPA AXIS get back to normal? I see that I get stressed for small things which was not the case earlier before all this started.

I am doing the saliva test – that will give some idea. The whole day I was at home and relaxed though.

Interesting reading! I have been helped tremendously by working with an amazing nutritionist ( who also could read my blood work better than any of the endless top MD’s on 3 continents I have seen and worked with) and being on a very strict GAPS/Paleo/WAPF primal template diet for many years.

BUT the key that has helped me most is the SOMA from Dr Joseph Da Cruz ( and Dr Diamond) who also works together with a specially trained cranial sacral therapist to heal the cranial issues and restores cranial rhythms.

The difference is immediate and astounding ( worth flying to Australia for!!) More people with CFS or any chronic illness should look into this. Truly profound ( from someone who has tried everything).

Interestingly, a few other things that have helped me have been Diatomaceous earth, Dr. Peak’s natural progesterone, NAC, TCM in China and Asia ( not so much in USA and Europe), castor oil packs, magnesium oil or epson salts compresses, iodine and L-tyrosine, B vitamins, and free daily Lajin!

I found out about Dr Da Cruz through Ramiel Nagel ( author of how to cure cavities naturally via diet) who highly recommended him and who also has had great experiences with healing via the SOMA.

Dr Da Cruz has had amazing results with chronic fatigue with the SOMA as well as many mysterious and chronic conditions from diabetes to rhem. arthritis.

Sadly few know about this, but I will be writing more on this topic as it is a key that is missing. The SOMA also seems to really help with getting a deeper sleep and help absorb nutrients and supplements.

As someone with perfectly straight teeth, I never, ever would have guessed how powerful this could be or that I could benefit from palate expansion at 60! It will take time, but what is fascinating is how it works immediately…even as the healing process continues.

B/P, blood sugar, cranial rhythms etc rates change immediately when it is in or out.

My 13 year old daughter and I ( with very different issues) have had amazing results and I have talked to many others who also have had these kind of miracles.

You are lucky Allison because the best people in the world at this are in Canberra.

He (and his website) is very humble, but what he does is mind blowing! ( make sure you schedule it with his cranial sacral specialist Namja too as they work amazingly together…both bringing different and complementary unique skills).

He has also had amazing success with healthy Olympic athletes ( flying in from many nations) who break their own records while using the SOMA.

I’ve done a ton of research on this area of dental innovation ( interviewed all the top people) and this guy is doing the best work by FAR in this area…the ONLY one who invented it with a holistic MD, works with cranial sacral experts and chiropractors when needed….and ONLY one who is doing cranial work, NOT orthodontia and in the least invasive, natural way.

He is also well trained in nutrition, Qigong and healing as voltage in the brilliant Dr Jerry Tennant energy kind of way. ( Tennant was a brilliant surgeon who healed himself from a chronic disease that almost killed him and a must-read for anyone with a chronic condition or interested in health).

This stuff is so powerful, I wish there were teams like this all over, but lucky you…live near the best one!

I didn’t know if I would survive my long flight there, but I got immediate relief and thrilled I took the risk.

This is amazing info Jeanne! Canberra is where I grew up, and I’m only 2hrs drive away from it now, so I’m pretty excited right now! I’ve also been looking into Chinese herbalism. Restoring the Jing. I’ll be trying Jing City and Adrenal tonic put together by Truth Calkins and David Wolfe, soon! You can find info on it on the Longevity warehouse website. Has anyone else tried it?

I have had CFS for 10 years now and am making a slow recovery. I had a salivary adrenal panel which showed my cortisol was normal but my DHEA was on the low side with a reversal of when you would expect it to be high and low over the 24 hours. Other tests showed my mitochondria to be badly compromised and functioning at less than 20 % of the bottom end of normal. I also have nickel toxicity which is proving difficult to shift because of severe reactions to detox protocols. The one thing I have been able to tolerate is kefir made with raw milk which I am hoping is aiding in detoxing. Although my tests showed my adrenals not to be in too bad a state, I cope with stress poorly and have a history of depression and low self esteem as you said. I also suffered from severe eating disorders in the past and then became a vegan. Both these no doubt added to the stresses on my body and contributed to the CFS. Along with working on my diet (now a meat eating paleo follower), learning to manage stress and anxiety has been key for me. Getting out of that chronic stress state and into a state where I can heal has been a long process. Thanks for this article, it’s very much appreciated.

Kelsey and Nickey, What are the best tests to determine mitochondrial dysfunction, & which kind of doctor do I go to for this? Mito dysfunction is on my suspicion list for my depressed son who sometimes has vomiting issues (Please see my post below). Thanks!

I can’t say that this is the best place to go to as I have no way of judging. However, I live in the UK and my tests were arranged via Dr Myhill http://www.drmyhill.co.uk/ She does make the mitochondrial function tests available to overseas patients. I think similar tests are available in the US but I don’t know for sure. Have you looked up Dr Cheney in the US? I’ve come across his name a lot.

I strongly suggest getting your zinc:copper balance assessed – by looking at the ratio between plasma zinc and serum copper. Eating disorders and poor stress tolerance can both be linked to poor zinc status. There are many doctors who now treat this problem and Chris K covered it in an old podcast. Good luck

Great article !. My wife has long suffered from CFS, I have taken it upon myself to research the potential therapies to help her over the past 7-8 years since mainstream medicine has been of no help at all.

I had sometime ago made the correlation between the symptoms of CFS and the symptoms of adrenal fatigue. In response we have been using Rhodiola Rosea. there is a wonderful product made by Nanton Neutriceuticals here in Canada called Rhoziva (www.rhoziva.com).

I am in no way related to the manufacturer of the product, I should say that first. I went with this particular product because of the high standard in product and production. I can say without a doubt that it has been by far the best treatment I have found to date.

My wife is now able to go almost all day without the normally inevitable decline coming after the first few morning hours. She is better able to cope with mental stress as well as the physical. As your interested readers will know the two are the same for a CFS sufferer – they exact the same toll.

Her mood is elevated and even, and she is generally ‘stronger’. It is night and day truly.

Nanton states that one should take a month off after 4 months of usage, perhaps this is a question more for the manufacturer but, if you are familiar with Rhodiola do you agree with that statement and if so why ?. I ask because once off the Rhoziva my wife is quickly back to the original CFS state.

Yes, one is still dependent on the product for relief of symptoms and it is not a cure but, my belief is that if the body is able to use the adaptogen in such a dramatic fashion it will allow the body the needed time and resources to seek out and correct the CFS cause. Perhaps a bit of wishful thinking but, so far it is the ONLY treatment that has given her mind and body a chance in 15 years.

I should note that the brain fog also vanishes with the treatment and it has helped immensely in her ‘coming off’ the addictive poison Effexor.

Although this treatment my be very personal and having differing results for different people I hope our research and experience goes some way in assisting others with this horrible illness. I would welcome any questions or comments also.

Hi Cliff – I’m not sure of the reasoning behind the take one month off statement. I’d ask the manufacturer why they say that. Of course I can’t really give you advice over the internet but I will say that if it were me and that supplement helped me function then I’d likely stay on it. Hopefully your wife is doing mind-body exercises to help her HPA axis as well!

It is pretty common for herbalists to recommend giving your body a “break” from your herbal supplements every so often. I’m not sure if this is based on a long standing tradition or is a more modern idea.

I’d assume the idea behind taking a break from it every 4 months it’s to maintain one’s sensitivity to the substance. This is what is recommended with phenibut which is a pure form of GABA, but in that case it may be more about preventing dependence.

Have you ( or anyone else) tried rhodiola in a combination product? . Ive heard of better success with combination adaptogenic products such as the Energy Xtra. ( I haven’t tried it yet). It contains rhodiola rosea, cordyceps sinensis, ashwagandha and eleuthero (all potent adaptogens)

I am just wondering if any one has tried both and what was their experience. ( As I may try one of these but am not sure which one to try).

I don’t know if this applies to your situation, but I was told to not take my NAC one day a week ( likely on the same principal reason…giving the body a rest, even though it helps). Perhaps you could look into doing something like that?

I can only speak from my personal experience and the good fortune I had to discover the late great endocrinologist William Jefferies. He usually prescribed a form of low-dose cortisol (hydrocortisone) for a two-week trial to his patients with CFS or “unexplained chronic-fatigue.” Clearly, this condition is usually a stress-hormone issue that needs to be dealt with properly.

Good article. I had chronic fatigue from the ages of 14-15 to about 23-24. It really does a number on your mental health as well as not physically being able to do much. Once I cut the grains out, and I mean all of them, it was a night and day difference. Probably took a bout 3 days and I felt amazing. Even now if were eat a plate of pasta or a decent amount of bread, I will feel the symptoms come back and will usually affect my sleep and they will persist into the morning. Grains act as a huge suppressing factor on my body.

Jesse, so glad to hear that changing your diet was a night and day difference for you! Sadly, I don’t think this is the case for many CFS patients – usually they have to go above and beyond diet changes. You’re one of the lucky ones!

Hi Jesse, I am on the same page as you. I first had CFS in 2000 and then again in 2009 along with fibromyalgia. For me, eliminating grains, sugar, cheese and eating totally whole foods with the addition of supplements, I overcame the worst of my symptoms in about 3-4 months. The last time I had it I also tried acupuncture which seemed to hasten my recovery. It’s funny, I knew I was going to have relapse in 2009. I was so stressed from work working the night shift. My resistance was down and I picked up a virus (it is still un-named) and I was out. I also forced myself when I could to walk. Even walking a half block was hard but I did it when I could. In late 1999/early 2000 I thought I had the flu and it turned out to be CMV. In the 1980’s I came down with mono/Epstein-Barr. Definitely watching my diet and not trying to overdo it keeps me functioning. Because of all this, I’m now studying nutritional therapy. I am also a nurse and and studying for my nurse practitioner degree. I want to help those who suffer from illnesses that can be corrected or at least partially alleviated through proper nutrition and lifestyle.

Hi This is very interesting. I was diagnosed with CFS / ME after a bout of glandular fever (adrenals pumped to try and combat virus and never quite got back to normal). It then disappeared and returned with a vengeance after a root canal treatment, which I am convinced was triggered by a huge shot of adrenaline pre-treatment. The CFS brought with it a whole host of other problems (immune dysfunction and depression.) All these were SYMPTOMS of adrenal dysfunction, rather than being a trigger of the CFS, which I believe is the most common misperception of the illness. Physical symptoms manifest as a result of body being on constant fight or flight, normally post virus.

I read somewhere about being caught in the ‘adrenal loop’ (adrenals not working properly which then triggers dopamine to plummet and anxiety levels to rocket, hence triggering even more adrenaline; as you mention in your piece.)

I used the Lightning Process to break the adrenaline loop. It worked after a week. (I was doing it about eighty times a day at first.) I have since come across loads of people who have used the same treatment – in fact a friend wrote about it for The UK Times. If anyone reading this has ME and haven’t heard of this treatment, please take a look. I haven’t looked back once.

Unfortunately the UK doctors aren’t really aware of this so am thrilled you have written about it.

Did you do take the LP course in England, or did you just read the book? I looked it up and it looks really interesting. I live in the US and it would be too much to travel to England to take the 3 day course. I was wondering if the book is just as effective. Thanks and I’m glad you are doing well.

Jackie – I believe LP seminars are held world-wide, either by a local practitioner or one that travels around. I live in Sydney and we have a few LP practitioners here in Australia and also ones that travel here from the UK.

I know someone in Singapore who recovered from CFS with LP. I’d like to try it but the cost is a little high for me right now.

Thanks Allison. You’re right – I found 2 people in the US. I’ll look into it more, because I’d love to try it. I think diet/supplements/nutrition/lifestyle are all important, but the more I research chronic health issues, the more I’m convinced that there are both conscious and subconscious emotions at the root of them, and that energy medicine or mind/body medicine is what will truly heal.

One can have some things for 4 years but not CFS. Many things mimic some of the symptoms of CFS so it can be mistaken for CFS. Many doctors diagnose it with little to no evidence. An upregulated immune system is part of the profile. CFS is a systemic infection just like so many chronic diseases.

I don’t usually comment on threads but I couldn’t resist on this one because there is a cure for CFS and it is the Lightening Process as an earlier thread mentioned so if you really want to be cured then there is a way.

A close family member of mine sufferered from CFS for 7 years we came across the Lightening process by Phil Parker.

To be honest we were a little unsure at first if it was just a scam as it was priced at about £700 and we didn’t exactly have cash like this laying about. However we were recommended it by somebody we knew who’s son had been cured by this process and we were so desperate to end this horrendous condition that we went for it.

Before the process began the practioner made several telephone conversations – the core of this is that you MUST BELIEVE it is going to work – if you truly want to recover then you will take the chance and believe it is going to work – and I promise – it will work.

The NHS in the UK does nothing but try to alleviate the symptoms through tablets and through consultation sessions – they say it can’t be cured. Well I have living day proof that it can be cured.

Google The lightening process Phil parker of follow the link below– give them a call, get a consultation and recover- the money is worth it and if you don’t have the money you will find it if you really want to recover http://www.lightningprocess.com/live-a-life-you-love/

If any suffer is in Australia – I recommend reading Professor John Dywers book : * Th body at war* & was last at prince of wales hospital ? Sydney . Another enlightened specialist is a scottish Professor Campell Murdoch . I got hit with Tapanui Flu after an orally transmitted glandular fever type virus in a mini epidemic (not known at the time) on top of the undiagnosed igg subsets disorder (Hypogammaglobdemia) SP + general low iron repeatedly from mid teens , with symptoms starting to wane about 7-8 yrs into it & testing no early of late antigens for Epstein Barr Virus/Mono I contracted this circa 95-97 (on retesting) & it was like a bad cold compaired to a heavy flu in comparison for th original infecting virus (My Dr at the time was a VD specialists as well as family Dr & he thought I’d originally contracted Aids) Now my main caregiver , my ever loving stuck through thick & thin with me, with doubting drs & hospital/s , has just died a week ago of a heart attack 1 hour of me getting home from early too soon hospiyal disc harge for high blood sugars – not investigated after 2nd hospitalizing for same & now I’ve a lonely fight. Colour therapy, good music & negative Ion generator has helped , but when the (NZ) medical profession have come double circle from “its in the mind” to accepted 10 years ago , to ” its in the mind, Malingerer” it damn hurts , in the face of discoid (not donut) & cup shaped Red cells & multiple lowered white cell count & diminished HPA axis function to chronically low testosterone levels, high uric acind (to point of multiple kidney stones & “white calcifications in testes (5) ) & High lipid levels & High Urine Calactermines (sp)…

It would be nice to hear from the opposite sex GENUINE sufferer, or another male needing help (as I’ve forgotten have of what I’ve learnt through cutting edge research & Practical experience, before others with a vested ‘Study’ Interest , caught up

Like those in a wheelchair find: its not being in the chair, but others (often naive & unfeeling) response to it. Goodluck all . T , New Zealand. PS I can give a list of whats worked for me over the years, I loved ya Dad 1.2.28- 23.6.2014

If thats in referance to me , ‘am not currently in a wheelchair , but have been as sometimes, don’t have the muscle strength to walk more than 50-100 meters. There’s natural remedies & then there’s natural remedies , asprin is natural but then so is poison ivy…. Can’t tolerate most Herbs …. but thanks for the input.

Antihistamine has been a big improvement

What annoys is some who self-diagnose (out of lack of options I guess) that they then take along their latests net download talking of + & – voltage energy channels etc & stuff it up for the genuine when it comes to shaping many so-called specialists attitudes , that the truely ill wear in the way of a scoffing blow-off etc., like Fibro – ” All in the mind” and/or psychogenic based